Report on the Third World Summit of Brain Tumour Patient Advocates 2017 by The International Brain Tumour Alliance (IBTA)

Third Biennial World Summit of Brain Tumour Patient Advocates BUILDING BRIDGES ACROSS THE INTERNATIONAL BRAIN TUMOUR COMMUNITY

19th - 22nd October 2017 The Tower Hotel, London, United Kingdom

www.theibta.org

GREATER COLLABORATION n GREATER KNOWLEDGE n GREATER HOPE Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Contents Acknowledgements and sponsors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

Welcome letter . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

About the International Brain Tumour Alliance (IBTA) . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

Summit Schedule . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 - 11

Review of Summit Sessions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12 - 87

Participants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 88 - 114

Summit Photo Album . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 115 - 122

Report writer: Stuart Farrimond (IBTA) Editors: Kathy Oliver (IBTA), Gordon Oliver (IBTA), Jeanne Pasmantier (IBTA) - www.theibta.org Design: Edwina Kelly - edwina@edwinakellydesign.co.uk Photography - © Mario Ferraro for MVF Studios - https://mvfstudios.biz/ Cover photo by Mario Ferraro of some of the participants at the IBTA’s third biennial World Summit of Brain Tumour Patient Advocates, October 2017, London, United Kingdom © The International Brain Tumour Alliance 2018 (except for photographs by MVF Studios which are used under license from MVF)

Variations in Spelling Spelling in this publication varies according to country-specific practices and is thus variable throughout the report. For example, ‘tumor’ is spelled without a “u” in the United States and other countries but as ‘tumour’ in the United Kingdom and other countries. Sometimes the term ‘neuro-oncology’ is expressed with a hyphen and at other times without a hyphen. To preserve the international nature of this publication, the Summit organisers have decided to vary the spelling accordingly.

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Acknowledgements and Sponsors The International Brain Tumour Alliance (IBTA) is grateful to the following companies for their support of the Third Biennial World Summit of Brain Tumour Patient Advocates.

We are very appreciative of the wise advice, help and support provided by the IBTA’s Senior Advisors: Jean Arzbaecher, Jenny Baker, Rosemary Cashman, Maureen Daniels, Stuart Farrimond, Anita Granero, Carol Knight, Carol Kruchko, Sharon Lamb, Mary Lovely, Mary Ellen Maher, Sally Payne and Chris Tse. We’re delighted to welcome to the Summit representatives of leading brain tumour patient advocacy, support and information organisations from 29 countries around the world. Thank you all so much for your support of the IBTA 2017 Summit. A big thank-you to our medical and research specialists, and policy and regulatory speakers who have made time in their hectic work schedules to join us in London and to generously impart their knowledge: Gelareh Zadeh, Normand Laperriere, Mark Gilbert, Alexandra Diaz Alba, Hariz Hassan, Teddy Totimeh, Terri Armstrong, Elias Pean, Jeff Sloan, Madeline Pe, Rakesh Jalali, Suzanne Wait, Shannon Boldon, Brian Nyatanga and Stuart Farrimond.. Grateful thanks go to Ms Christine Quah, Manager, Global Accounts, HelmsBriscoe (www.helmsbriscoe.com) for her invaluable help in finding and securing our Summit venue. Many thanks also to The Tower Hotel, for their help with our accommodation and conference arrangements. The Third Biennial World Summit of Brain Tumour Patient Advocates, a project of the International Brain Tumour Alliance (IBTA), is a wholly independent activity and has been conceived, planned and carried out by the IBTA. For details of the IBTA’s sponsorship and transparency policies, please see www.theibta.org DISCLAIMER: The International Brain Tumour Alliance (IBTA) has made every effort to be accurate regarding the information contained in this report. The IBTA accepts no liability for any inaccuracies or omissions herein nor can it accept liability for any loss or damage resulting from any inaccuracy in this information or third party information. The information contained in this report is for educational purposes only. The material in this report is in no way intended to replace professional medical care, advice, diagnosis or treatment from a doctor, specialist or other health care professional. Company sponsorship of the Third Biennial World Summit of Brain Tumour Patient Advocates does not imply the IBTA’s endorsement of any particular form or forms of therapy, devices, medical regimens, plans or behaviour referred to, promoted, manufactured or distributed by those companies. The views expressed by participants at the Third Biennial World Summit of Brain Tumour Patient Advocates and included in this report are not necessarily those of the International Brain Tumour Alliance. It is not the intention in this report to print any matter that discriminates on the grounds of race, religion, sex, sexuality, belief or disability.

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

The 2017 World Summit of Brain Tumour Patient Advocates Dear Friends, On behalf of the IBTA’s Board of Directors and Senior Advisors, we hope you find this report of the 2017 World Summit of Brain Tumour Patient Advocates of interest. Since our last IBTA World Summit in Sitges, Spain in 2015, we’ve been delighted to learn of participants’ progress in the world of brain tumour patient advocacy as their organisations go from strength to strength, meeting the various challenges which exist in the brain tumour community. We know that the patient voice is becoming louder and more effective than ever! It’s very exciting to be part of a growing patient advocacy community around the world which sees advocates participating in scientific conferences by developing sessions, exhibiting and also presenting and co-chairing; serving as members of high-level, multi-stakeholder policy and research consortia; advising on the design and implementation of clinical trials; interacting with regulators and Health Technology Assessment (HTA) bodies, providing a wealth of information and support to patient communities; and, of course, raising significant awareness of this rare disease, and amounts of funding for research. Still, there are many areas of the world where patient advocacy has yet to take a strong hold, where the patient voice is not as prominent as it should be, where even basic aspects of palliative and end-of-life care are not available and where cancer is considered to be very much a taboo subject. We, as patient advocates, can work to change these situations and, at the same time, reduce disparities. We learned much from each other during the IBTA Summit and developed a new understanding of the challenges which our fellow members of the international brain tumour community face in their own countries. We were also energised and inspired by the examples shared at the Summit of the crucial work being done by brain tumour patient advocacy groups around the world. Here at the IBTA we strongly believe that the biennial IBTA World Summit of Brain Tumour Patient Advocates is a crucial tool for educating, motivating, networking and bringing together the patient advocacy community in order to achieve our common goal: improving not only survival in this devastating disease but also improving quality of life and instilling hope in the patients, families and caregivers we serve. With best wishes,

Kathy Oliver IBTA Chair and Co-Director

Left: Participants at the IBTA’s Third Biennial World Summit of Brain Tumour Patient Advocates in London, UK, October 2017. For a full list of participants, see pages 88 to 114 of this report. 4

Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

About the International Brain Tumour Alliance (IBTA) The International Brain Tumour Alliance (IBTA) is a global network founded in 2005 as a dynamic worldwide community for brain tumour patient organisations, patients, caregivers and others involved in the field of neuro-oncology.

INTERNATIONAL BRAIN TUMOUR ALLIANCE

THE IBTA brings together experience and expertise from a wide range of stakeholders including patient organisations, researchers, healthcare professionals, government agencies, regulators, medical societies, key opinion leaders and others. Our vision is a world free from the fear of brain tumours. Our mission is to advocate for the best treatments, information, support and quality of life for brain tumour patients, offering them, their families and caregivers hope – wherever they live in the world.

We work with Alliance supporters to:

ENCOURAGE the establishment of brain tumour patient groups in countries where they don’t yet exist;

PROMOTE collaboration on programmes and projects to benefit the brain tumour community;

HIGHLIGHT the challenges and needs of patients and caregivers;

DISSEMINATE knowledge, information and best practice;

HELP shape health and research policies at national and international levels;

HONOUR the courage and achievements of brain tumour survivors and caregivers. The IBTA’s work is underpinned by the values of

SOLIDARITY EQUITY HONESTY INTEGRITY TRANSPARENCY RESPECT HOPE

•

We are committed to strengthening the evidence base for patient-centred treatment and care, in particular through the telling of and promoting of peoples’ experiences and perspectives. 5

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Third Biennnial World Summit of Brain Tumour Patient Advocates working together…achieving progress…sustaining hope

The Tower Hotel, St Katharine’s Way, London, E1W 1LD, United Kingdom DAY 0 - THURSDAY, 19TH OCTOBER 2017 REGISTRATION Throughout ARRIVALS at The Tower Hotel. Check in. All Summit participants The Tower Hotel front lobby, the day on the ground floor 13.00 to 18.00 REGISTRATION FOR PARTICIPANTS All Summit participants The Tower Hotel front lobby, (1.00 pm attending the Third Biennial IBTA World Summit IBTA Hospitality Desk on to 6.00 pm) of Brain Tumour Patient Advocates. the ground floor 5 hrs Own arrangements for dinner.

DAY 1 - FRIDAY, 20th OCTOBER 2017 07.30 to 08.30 60 mins

REGISTRATION FOR PARTICIPANTS Summit participants who attending the third biennial IBTA World Summit didn’t register yesterday of Brain Tumour Patient Advocates.

PLENARY SESSION 1 08.30 to 09.15 45 mins

Tower Suite 3

IBTA SUMMIT OPENING SESSION - All Summit participants Tower Suite 3 welcome and introductions of participants

09.15 to 09.45 STATE OF THE ART: 30 mins incl Q&A BRAIN TUMOUR SURGICAL TREATMENTS

Gelareh Zadeh (Division of Neurosurgery, University of Toronto, Canada)

Tower Suite 3

09.45 to 10.15 STATE OF THE ART: 30 mins incl Q&A RADIATION TREATMENTS (including the elderly GBM trial)

Normand Laperriere (Professor, Department of Radiation Oncology, University of Toronto, Canada)

Tower Suite 3

10.15 to 10.45 30 mins incl Q&A

STATE OF THE ART: CHEMOTHERAPY, IMMUNOTHERAPY, DEVICES, ETC (with a short introduction by Mark Gilbert and Terri Armstrong on the rare CNS tumours programme)

Mark Gilbert (Chief, Neuro-Oncology Branch, National Cancer Institute, USA)

Tower Suite 3

10.45 to 11.15 30 mins

COFFEE/TEA BREAK AND NETWORKING

All Summit participants

Bridge Suite 1

Co-chaired by Sharon Lamb (Neuroscience Nurse, Ret’d, USA) and Jean Arzbaecher (Clinical Nurse Specialist, University of Illinois, USA)

Tower Suite 3

PLENARY SESSION 2

Chaired by Kathy Oliver (Chair and Founding Co-Director, International Brain Tumour Alliance - IBTA)

The Tower Hotel front lobby, IBTA Hospitality Desk on the ground floor

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

11.15 to 12.45 LET’S TALK ABOUT… 90 mins 11.15 to 11.30 - Adult brain tumours Sarah Lindsell incl Q&A early, accurate diagnosis is key (Chief Executive Officer, The Brain Tumour Charity, UK)

11.30 to 11.45 - Brain tumours in the Czech Republic

Hariz Hassan (Radiation Oncologist, Czech Republic)

11.45 to 12.00 - Brain tumours in Mexico

Alexandra Diaz-Alba (Neuro-oncologist, National Institute of Neurology and Neurosurgery, Mexico)

12.00 to 12.15 - Brain tumours in Ghana

Teddy Totimeh (Neurosurgeon, Greater Accra Regional Hospital, Ghana)

Kathy Oliver (Chair and Founding Co-Director, International Brain Tumour Alliance – IBTA)

12.15 to 12.30 - Summary of the Sub-Saharan Africa Neuro-Oncology Collaborative (S-SANOC) meeting on 19th October

Tower Suite 3

12.45 to 14.00 LUNCH BREAK AND NETWORKNG All Summit participants The Gallery Restaurant, (12.45 pm with African crafts demonstration. Upper Foyer, The Tower Hotel to 2.00 pm) In Cameroon, funds for the care of brain tumour 75 mins patients are raised by handcrafting traditional African accessories. Irene Azong Wara, founder of the Cameroonian brain tumour and cancer support group, Jacob’s Hope Foundation, gives a demonstration of how these accessories are made. PLENARY SESSION 3 Co-chaired by Chris Tse Tower Suite 3 (IBTA Senior Advisor, New Zealand), and Sally Payne (IBTA Senior Advisor, Australia) 14.00 to 14.40 (2.00 pm to 2.40 pm) 40 mins incl Q&A

HELPING PATIENTS AND FAMILIES Terri Armstrong BE THEIR OWN BEST ADVOCATE IN THEIR CARE (Senior Investigator, (including survivorship care plans, but also Neuro-Oncology Branch, medications, seizures, etc, with a focus on National Cancer Institute, USA) partnering in care)

Tower Suite 3

14.40 to 15.15 UNDERSTANDING THE ROLE OF THE REGULATOR (2.40 pm to 3.15 pm) 35 mins incl Q&A

Elias Pean (Product Lead, European Medicines Agency - EMA)

Tower Suite 3

15.15 to 15.45 COFFEE/TEA AND NETWORKING BREAK (3.15 pm to 3.45 pm) 30 mins

All Summit participants

Bridge Suite 1

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

MASTERCLASS SESSION A (Concurrent breakaway)

Chaired by Jenny Baker (IBTA Senior Advisor, UK)

15.45 to 17.00 (3.45 pm to 5.00 pm) 75 mins

WHAT’S NEW IN CLINICAL TRIAL DESIGN? (Innovative approaches: adaptive, basket, umbrella, etc trials and design, including a discussion on endpoints)

Normand Laperriere (Professor, Bridge Suite 2 Department of Radiation Oncology, University of Toronto Canada)

Bridge Suite 2

MASTERCLASS SESSION B (Concurrent breakaway)

Chaired by Carol Kruchko (Founder & Tower Suite 3 President, Central Brain Tumor Registry of the USA - CBTRUS)

15.45 to 17.00 THE CHALLENGE OF MISSING DATA (3.45 pm What can we, as patient advocates, do to help? to 5.00 pm) Also incorporating the EORTC’s SISAQOL initiative 75 mins (pilot module)

Jeff Sloan (Professor of Biostatistics and Oncology, Mayo Clinic, USA) and Madeline Pe, (Researcher, Health-Related Quality of Life and Patient Reported Outcomes, European Organisation for Research and Treatment of Cancer EORTC, Belgium)

Tower Suite 3

MASTERCLASS SESSION A (Concurrent breakaway)

Chaired by Jenny Baker (IBTA Senior Advisor, UK)

Bridge Suite 2

17.00 to 18.15 (5.00 pm to 6.15 pm) 75 mins

WHAT’S NEW IN CLINICAL TRIAL DESIGN? (Innovative approaches: adaptive, basket, umbrella, etc trials and design, including a discussion on endpoints and trends in brain tumour research)

Normand Laperriere (Professor, Bridge Suite 2 Department of Radiation Oncology, University of Toronto Canada)

MASTERCLASS SESSION B (Concurrent breakaway)

Chaired by Carol Kruchko (Founder & Tower Suite 3 President, Central Brain Tumor Registry of the USA - CBTRUS)

17.00 to 18.15 THE CHALLENGE OF MISSING DATA (5.00 pm What can we, as patient advocates, do to help? to 6.15 pm) Also incorporating the EORTC’s SISAQOL initiative 75 mins (pilot module)

Tower Suite 3

19.30 to 19.45 SUMMIT GROUP PHOTOGRAPHS (7.30 pm to 7.45 pm)

All Summit Participants

To be advised

19.45 to 22.00 IBTA WORLD SUMMIT DINNER (7.45 pm to 10.00 pm)

All Summit Participants

Bridge Suite 1 and 2

18.15 (6.15 pm) SUMMIT ENDS FOR THE DAY

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

DAY 2 – SATURDAY, 21st OCTOBER 2017 PLENARY SESSION 4

Chaired by Maureen Daniels (BScN, RN, Coordinator, Gerry and Nancy Pencer Brain Tumour Centre, Canada)

08.30 to 09.00 THE WHO 2016 CLASSIFICATION 30 mins incl Q&A OF BRAIN AND CNS TUMOURS - what patients and caregivers need to know

Rakesh Jalali (Professor, Radiation Tower Suite 3 Oncology, Tata Memorial Centre, Mumbai/In Charge, Brain Tumour Foundation of India)

09.00 to 09.30 PEDIATRIC NEURO-ONCOLOGY – 30 mins incl Q&A WHERE ARE WE TODAY WITH TREATMENT? WHERE SHOULD WE GO TOMORROW?

Rakesh Jalali (Professor, Radiation Oncology, Tata Memorial Centre, Mumbai/In Charge, Brain Tumour Foundation of India)

Tower Suite 3

MASTERCLASS SESSION C (Concurrent breakaway)

Chaired by Gordon Oliver (Director, International Brain Tumour Alliance – IBTA)

Bridge Suite 2

09.30 to 10.45 SUSTAINABLE BRAIN TUMOUR CARE: 75 mins reducing inefficiencies and waste in our health care systems (All.Can pilot module)

Facilitated by Suzanne Wait (Managing Director, The Health Policy Partnership, UK) and Shannon Boldon (Researcher, The Health Policy Partnership, UK)

Bridge Suite 2

MASTERCLASS SESSION D (Concurrent breakaway)

Chaired by Mary Ellen Maher (RN, APN, CNRN, Northwestern Brain Tumor Institute, USA)

Tower Suite 3

09.30 to 10.45 RARE CNS TUMOR PROGRAM: 75 mins Implementation of the Cancer Moonshot Rare Tumor Patient Engagement Network.

Mark Gilbert (Chief, Neuro-Oncology Tower Suite 3 Branch, National Cancer Institute, USA) and Terri Armstrong (Senior Investigator, Neuro-Oncology Branch, National Cancer Institute, USA)

Tower Suite 3

10.45 to 11.15 COFFEE/TEA BREAK AND NETWORKING All Summit participants 30 mins

Bridge Suite 1

MASTERCLASS SESSION C (Concurrent breakaway)

Chaired by Gordon Oliver (Director, International Brain Tumour Alliance – IBTA)

Bridge Suite 2

11.15 to 12.30 SUSTAINABLE BRAIN TUMOUR CARE: 75 mins reducing inefficiencies and waste in our health care systems (All.Can pilot module)

Facilitated by Suzanne Wait (Managing Director, The Health Policy Partnership, UK) and Shannon Boldon (Researcher, The Health Policy Partnership, UK)

Bridge Suite 2

MASTERCLASS SESSION D (Concurrent breakaway)

Chaired by Mary Ellen Maher (RN, APN, CNRN, Northwestern Brain Tumor Institute, USA)

Tower Suite 3

11.15 to 12.30 RARE CNS TUMOR PROGRAM: 75 mins Implementation of the Cancer Moonshot Rare Tumor Patient Engagement Network.

Mark Gilbert (Chief, Neuro-Oncology Branch, National Cancer Institute, USA) and Terri Armstrong (Senior Investigator, Neuro-Oncology Branch, National Cancer Institute, USA)

Tower Suite 3

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

12.30 to 13.30 LUNCH BREAK and NETWORKING All Summit participants (12.30 pm to 1.30 pm) 60 mins

The Gallery Restaurant, Upper Foyer, The Tower Hotel

PLENARY SESSION 5

Co-chaired by Mary Lovely (PhD, RN, CNRN, USA) and Chris Tse (IBTA Senior Advisor, New Zealand)

Tower Suite 3

13.30 to 14.45 PANEL DISCUSSION AND Q&A (1.30 pm palliative and supportive care for brain tumour to 2.45 pm) patients: challenges in high and low 75 mins income countries

PANELISTS (Brian Nyatanga (Senior Lecturer, Academic Lead for Centre for Palliative Care FHEA, University of Worcester, UK)

Tower Suite 3

Terri Armstrong (Senior Investigator, Neuro-Oncology Branch, National Cancer Institute, USA)

Anita Granero (Founder & President, Oscar’s Angels, France)

Melissa Lim (Founder and President, Brain Tumour Society Singapore)

Teddy Totimeh (Neurosurgeon, Greater Accra Regional Hospital, Ghana)

All Summit participants

PLENARY SESSION 6

Co-chaired by Twyla Bueno (Society for Neuro-Oncology Latin America - SNOLA) and Kristen Gillette (Founder & Executive Director, The Kortney Rose Foundation, USA)

14.45 to 16.00 LET’S TALK ABOUT… (2.45 pm 14.45 to 15.00 (2.45 pm to 3.00 pm) - Hugh Adams (Head of PR and to 4.00 pm) Campaigning through petitions and other Media, Brain Tumour Research 75 minutes Parliamentary processes in the UK – BTR, UK) incl Q&A 15.00 to 15.15 (3.00 pm to 3.15 pm) – Robin Boettcher (President/ The PBTF Imaginary Friends Society Chief Executive Officer, Pediatric Brain Tumor Foundation – PBTF, USA)

15.15 to 15.30 (3.15 pm to 3.30 pm) - Brain tumours in the Cayman Islands

Brenda Archer (Founding Member and President, Brain Tumour Foundation of the Cayman Islands – “The Forgotten”)

Catherine Hindson (Chair, Brain Tumour Alliance Australia - BTAA)

15.30 to 15.45 (3.30 pm to 3.45 pm) - Challenges in serving a geographically-dispersed brain tumour community in Australia

Tower Suite 3

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

16.00 to 16.30 COFFEE/TEA BREAK AND NETWORKING (4.00 pm to 4.30 pm) 30 mins PLENARY SESSION 7

All Summit participants

Bridge Suite 1

Facilitated by Barrie Littlefield Tower Suite 3 (Head of Engagement, Cure Brain Cancer, Australia) and Kristina Knight (Director, Research Program Strategy and Community Relations, National Brain Tumor Society, USA)

16.30 to 17.30 PLENARY DISCUSSION – THE BRAIN TUMOUR (4.30 pm PATIENTS’ CHARTER OF RIGHTS: NEXT STEPS to 5.30 pm) 60 mins

All Summit participants

17.30 to 17.45 ONE MAN’S SURPRISING JOURNEY: (5.30 pm FROM BRAIN TUMOUR DIAGNOSIS to 5.45 pm) TO BISCUIT DUNKING 15 mins

Stuart Farrimond (Writer, Presenter, Tower Suite 3 Doctor, Educator, IBTA Senior Advisor, UK)

17.45 to 18.00 SUMMARY OF THE SUMMIT AND WRAP-UP (5.45 pm to 6.00 pm) 30 mins

Chaired by Kathy Oliver (Chair and Founding Co-Director, International Brain Tumour Alliance - IBTA)

Tower Suite 3

18.00 END OF SUMMIT (6.00 pm) REST OF EVENING AT LEISURE - OWN DINNER ARRANGEMENTS 18.00 to 19.00 (6.00 pm to 7.00 pm)

IBTA ADVISORS’ MEETING

IBTA Advisors Only

Mortimer Room

DAY 3 – SUNDAY, 22nd OCTOBER 2017

Check-out DEPARTURES AFTER BREAKFAST

Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Day One Welcome address Eighty-five participants from the four corners of the globe attended the IBTA 2017 Third Biennial World Summit of Brain Tumour Patient Advocates held at The Tower Hotel, London, UK from 19 to 22 October.

Above: Eighty-five people participated in the IBTA World Summit at The Tower Hotel, London, from 19 to 22 October 2017 (not all participants are pictured)

Above: IBTA Senior Advisors Jean Arzbaecher (left) and Mary Ellen Maher (right) organised the World Summit registration desk 12

Photos by MVF Studios

Above: The IBTA family globe â&#x20AC;&#x201C; decorated with coloured stickers showing some of the countries represented at the World Summit

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Delegates included representatives of patient advocacy groups, medical professionals, representatives from the Summit’s sponsoring companies and others. “We are all brain tumour experts in our own ways,” said Kathy Oliver, IBTA Chair and founding Co-Director, who welcomed everyone to the Summit. To demonstrate visually where participants had travelled from, a huge inflatable globe was placed on the stage, decorated with coloured stickers indicating all of the countries represented. “This year’s Summit is particularly special,” Kathy said, “because it follows immediately after a unique one-day event: the sub-Saharan Africa NeuroOncology Collaborative (S-SANOC) planning meeting which the IBTA organised with the Society for NeuroOncology (SNO) and the Zimbabwe Brain Tumour Association (ZBTA). This meeting, which was also held here at The Tower Hotel, is a first in the brain tumour world. It involved physicians, surgeons, researchers, brain tumour patients, current and former caregivers and patient representatives from across the African continent and beyond who came together yesterday to create plans for establishing a strong brain tumour collaboration across this diverse region.” Turning to the World Summit programme, Kathy encouraged all delegates to take advantage of the presence of some of the world’s leading brain tumour specialists and ask them questions in the sessions. She also urged everyone to take the opportunity to share their stories with other advocates and to create new collaborations.

Above: one of the Summit welcome slides

Above: IBTA Chair and Co-Director Kathy Oliver Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

“By sharing the challenges of brain tumours,” Kathy said, “we in the international brain tumour community can form meaningful and supportive working relationships with one another, and improve outcomes for our patients and caregivers.” Right: Some of the IBTA’s Senior Advisors. Front row, left to right: Jenny Baker, Maureen Daniels, Kathy Oliver, Mary Ellen Maher, Jean Arzbaecher, Sharon Lamb. Back row, left to right: Stuart Farrimond, Chris Tse, Gordon Oliver, Carol Kruchko, Sally Payne, Mary Lovely

Plenary Session 1 Clinical Updates from Health Care Professionals State of the art: brain tumour surgical treatments DR GELAREH ZADEH is a neurosurgeonscientist. She is Head of Surgical Oncology at University Health Network and Head of the Toronto Central Regional Cancer Program at Cancer Care Ontario; and also the Program Medical Director for the Krembil Neuroscience Centre at Toronto Western Hospital, Canada.

Key points: Technology has become increasingly incorporated into neurosurgery over the past twenty years. n Functional MRI scanning now visualises brain pathways to reveal how they correlate with a brain tumour. n Gliomas and other infiltrative tumours seed the brain with microscopic deposits, presenting one of the greatest surgical challenges for brain tumour removal. n Therapies targeting brain tumour cells which are distant to the main tumour mass should be prioritised. n Viral-based brain tumour therapies are the subject of exciting research. n Mass spectroscopy, a technology that allows rapid molecular diagnosis of a tumour during surgery, can potentially help guide the neurosurgeon. n

Photos by MVF Studios

Above: Neurosurgeon Dr Gelareh Zadeh (Canada)

Giving an up-to-date overview of surgical treatment for gliomas, Dr Zadeh discussed the history and evolution of brain tumour surgical therapies, current techniques, and future treatments under investigation. “The past 20 years have seen widespread incorporation of technology into surgical procedures,” Dr Zadeh said, “but surgical treatments have limitations and brain tumours pose particular challenges which include variability in technical expertise between surgeons across institutions and, critically, the variability within the tumours themselves. There is a need to move toward targeted therapy.” Dr Zadeh discussed early stereotactic techniques

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: Dr Gelareh Zadeh reviewed the latest approaches in surgical treatments for gliomas

and how they have developed. Conventional head frames, such as the Leksell and CRW (Cosman-RobertsWells) apparatus, fix onto a patient’s skull and guide the surgeon during tumour biopsies for diagnosis and histopathology (examination of cells in a laboratory). Pioneered more than fifty years ago, these techniques have evolved into modern devices using lasers for guidance. But even the newest apparatus is imperfect. Stereotactic biopsy has a sampling error of 33-66% for low-grade astrocytoma and 40% for anaplastic astrocytoma. Biopsy is generally only used in cases involving: n deep-seated tumours n brainstem and pineal region tumours n patients aged 70+ (with intent to give palliative care) n brain tumours involving eloquent cortical structures (areas that directly control function, such as movement) – which may also warrant awake surgery. For tumour removal (as opposed to a biopsy) functional MRI (a form of MRI scanning that detects areas of brain activity) may be used for tumours near eloquent brain structures. “Functional MRI offers many potential benefits,

revealing pathways within the brain that correlate with the location of the tumour.” Dr Zadeh said. “It can also be used with contrast imaging to potentially indicate whether a tumour is high or low grade. Nevertheless, surgeons tend to rely on awake surgery procedures rather than solely on functional MRI. Directly stimulating areas of the brain while the patient is awake can accurately identify tumour boundaries.” There are other technologies like mass spectroscopy, a technique for identifying specific molecular types within a tissue sample and angiography, which shows vascularity (blood supply) and helps maximise safe resection (removal of the tumour). Dr Zadeh explained that: “It can be difficult to tell the difference between a brain tumour and healthy brain tissue. There is no pain felt from the brain’s surface. So electrode stimulation while the patient is awake identifies eloquent brain structures before any tissue is removed. EEG (electroencephalography) is used at the same time to detect whether an epileptic seizure has been triggered. Our ability to integrate technology into surgical treatments has, I believe, plateaued. Brain tumours are diffuse diseases – gliomas migrate through white matter tracts and invade tissue distant from the Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

tumour mass. This poses perhaps the greatest challenge to surgeons.” Asking “How do we target these cells?” Dr Zadeh described novel therapies in current clinical trials. One such approach targeting migrated cells that is becoming more popular is called viral-based intratumoral delivery of therapeutics. During neurosurgery, viral-based therapeutics are injected into the brain which target and destroy tumour cells distant to the main tumour mass. “One such approach is Toca 511 and Toca FC. This technology uses a modified retrovirus (Toca 511) that infects and replicates inside tumour cells. The virus, which has limited effect on healthy cells, is delivered directly into the brain during surgery but then spreads and infects remaining tumour cells throughout the brain. The viral vector carries a ‘prodrug’ which converts into the chemotherapy drug 5-FU when Toca FC is administered via an oral tablet, turning the tumour cells into ‘chemotherapy factories’ while simultaneously activating the immune system.” Another approach is the DNX-2401 oncolytic virus trials with which Dr Zadeh’s team is involved. She said: “The agent is a genetically-engineered adenovirus that safely infects and replicates inside brain tumour cells, ultimately leading to their destruction. Like Toca 511 and Toca FC, this therapy also stimulates the immune system to attack tumour cells. The virus replicates in human tumours for a period of weeks to months, causes tumour tissue death during this time and stimulates immune cells to infiltrate the tumour. Our experience with phase 1 trials of DNX-2401 demonstrates few toxicities. On MRI scans, there is also evidence that it leads to long-term tumour tissue destruction.” The protocol for an ongoing phase 2 trial of DNX-2401 in combination with the drug pembrolizumab for patients with recurrent glioblastoma or gliosarcoma, will reveal more about the safety and efficacy of this therapy. Surgeons are often anxious about how much tissue to remove. The intraoperative molecular diagnosis of brain tumours has the potential to help with this quandary. The ‘molecular signature’ of a tumour can influence the course of the disease, and knowing this information at the time of an operation can help guide the surgeon on how aggressive their resection should be. New technologies can rapidly determine the molecular subtype of a brain tumour. Data show that gliomas with a mutated IDH gene produce higher 16

Photos by MVF Studios

levels of 2-HG – a substance which can be measured directly with specialist equipment called HPLV (High Pressure Liquid Chromatography) mass spectroscopy. This process takes about an hour - approximately the same amount of time for a surgeon to perform a resection. Technological advances mean that surgeons will have important molecular information before an operation finishes. IDH mutations are associated with a better outcome. Knowing this information might make it possible for a surgeon to administer IDH mutationtargeted therapies directly into the brain. Discussion Barrie Littlefield (Cure Brain Cancer Foundation, Australia): “Is the use of fluorescent dye to identify tumour tissue persuasive?”

Above: Barrie Littlefield, Head of Engagement at Cure Brain Cancer, Australia

Above: Lia LeRoy is the President of Werkgroep Hersentumoren, the Belgian brain tumour organisation

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Dr Zadeh: “Tumour-targeting fluorescent dyes (such as 5-ALA) are used to perform microscopic resection. They clearly visualise the infiltrative edge of a tumour and offer the surgeon an additional comfort zone during an operation. The technique does not address the tumour cells which spread into the brain tissue, however.” Lia Le Roy, President of the Belgian Study Group Brain Tumours (Werkgroep Hersentumoren vzw): “Can you give us more information about intra-operative open MRI techniques?” Dr Zadeh: “Scanning a patient during surgery adds an hour and the images produced can be difficult to interpret. A longer operation also adds extra risks, for example from prolonged anaesthetic use. For infiltrative astrocytoma, intra-operative MRI has limited benefit. This technology is better for skull base tumours although whether the technology is used depends on the tumour’s location as well as an individual surgeon’s

requirements and experience. Ultrasound technologies may offer greater added value in the future.”

Above: “Technological advances mean that surgeons will have important molecular information before an operation finishes,” said Dr Gelareh Zadeh

State of the art: radiation treatments DR NORMAND LAPERRIERE is Head of Ocular Oncology at Princess Margaret Cancer Centre, Canada, and Professor in the Department of Radiation Oncology at the University of Toronto.

Key points: Great advances have been made in recent years, but radiation therapy is often seen as a mysterious ‘black box’. n Beams of radiation can now be formed into the three-dimensional shape of a tumour, minimising damage to surrounding healthy brain tissue. n Improvements in imaging technology mean that contouring of brain tumours can be performed more accurately than before, and in three dimensions. n MRI and CT imaging play an important role in modern radiation therapy regimens. n Even low-tech solutions, such as DVD players used to play their favourite music, have improved young patients’ experience of radiotherapy. n Daily CT scanning during radiotherapy allows for ongoing dosing changes and adjustments, improving accuracy and lessening side effects. n

Combined units in treatment centres can perform imaging and administer radiation therapy simultaneously. n Newer radiation therapies - such as proton beam therapy - focus energy on tumour tissue, thus minimising damage to normal, healthy brain tissue. n

“I recall one of the first IBTA meetings in Edinburgh,” Dr Laperriere said, “when the International Brain Tumour Alliance was first established, and at which co-Director Kathy Oliver was present. Now, thirteen years later, I’m delighted to be speaking at the IBTA’s third biennial World Summit of Brain Tumour Patient Advocates!” Dr Laperriere then explained that radiation therapy starts with the treatment planning processes. The treatment needs to be simulated before it is administered which means scanning the patient with CT or MRI while in the treatment position. Brain structures and the brain tumour can then be mapped out. The radiotherapy team decides on the amount of radiation to use (the dosing). All of this information is transferred electronically to the linear accelerator (the equipment that generates and delivers radiation). The radiation plan is specific to the unique circumstances and brain tumour of each patient. Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above and right:: Dr Normand Laperriere from Princess Margaret Cancer Centre and the University of Toronto, Canada

Reviewing radiation therapy planning processes from the 1960s to the 1990s, Dr Laperriere showed images of equipment used historically, including face masks which immobilised patients. These were effective at keeping a patient’s head in position, but took a day to fabricate. Coloured crayons marked target areas. Simple radiation fields (lateral opposed fields) resulted in large volumes of normal, healthy brain tissue being exposed to radiation, increasing the risk of short and long-term major side-effects. Much progress has since been made thanks to advances in imaging, radiation technology and computer science. Daily image guidance is integrated into treatment protocols, so therapy can be adjusted to changes in the tumour on a day-to-day basis, minimising risk of damage to normal tissue. New technology includes radiosurgery and proton-beam therapy units. “Plastic immobilisation masks are now moulded to an individual’s face in a matter of minutes with quick- setting thermoplastics. This material is warmed and stretched over the face, then sets hard as it cools. Stereotactic surgery needs more rigorous immobilisation using pins affixed to a patient’s skull. Children under three are given general anaesthesia to keep them still. For older children a DVD player is a highly effective and low-tech approach for keeping the patient still and entertained during treatment.” 18

Photos by MVF Studios

The development of MRI has led to improvements in radiotherapy. MRI scans can clearly reveal the boundaries of a tumour along with the eloquent cortical structures (those regions that are critical to specific functions), which has led to more accurate radiation targeting. CT scans retain an important role and are used for daily scans because they generally have less geometric distortion. Imaging is also used for contouring, which is the process of tracing lines between the tumour and the normal tissue, so that radiation doses can be determined. A 3mm area of uncertainty is included in contouring, to allow for slight differences in positioning each day. Cone beam CT, which uses x-rays that spread in a cone rather than a straight beam, can be used to construct a 3D image of the skull, and is exquisitely sensitive to bone. Dr Laperriere showed imagery from a seven-year-old patient with a recurrent anaplastic ependymoma to demonstrate the value of this technique for creating a 3D ‘phantom’ of the patient’s skull for therapy planning purposes. There are a number of different types of radiation therapy. n Intensity Modulated Radiation Therapy (IMRT) has been a major improvement in radiation technology. IMRT allows the intensity of the radiation beam to be varied at any point in an x-ray beam. Sheets of radiation-blocking metal, called ‘leaves’, can move in and out of the path of the radiation beam to

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

block parts of it. These multi-leaf ‘collimators’ are computer-controlled and allow a radiation beam to be precisely shaped. The percentage radiation dose can be calculated for different brain regions. Historically, radiation was given from different angles with separate beams, but now it can be given in three dimensions with apparatus that rotates around the patient with the leaves sliding in and out to the pre-programmed shape as the machinery moves. This technology, also known as Volumetric Modulated Arc Therapy (VMAT), offers faster delivery of radiation and is helpful for shielding normal tissue from harm. n Image-Guided Radiation Therapy (IGRT) involves taking daily images of the brain while a patient is undergoing a radiation therapy regimen. Combined units are now able to administer radiotherapy while simultaneously imaging with CT. Newer units in development combine MRI imaging with radiation therapy. n Radiosurgery is a process of delivering radiation to a very precise region of the brain. Gamma Knife is one example of this technology. n Proton therapy uses charged particles (protons) to penetrate tumour tissue and these particles release most of their energy at a specific tissue depth, rather than throughout tissue. This technology minimises damage to normal tissue and offers a particular benefit to paediatric patients. Because the technology

is relatively new, there is little long-term data. However, a dataset for paediatric craniopharyngioma patients at St. Jude Children’s Research Hospital, USA, shows benefits from proton beam therapy in children’s cognitive function. From the best available data, proton beam therapy is associated with a cognitive decline that plateaus, whereas with x-ray radiation therapy cognitive function continues to decline with time. Survival with proton beam therapy appears to be similar to other types of radiation therapy but because there is less damage to healthy tissue, there will be a lower risk of developing secondary radiationassociated tumours. Finally, radiation therapy causes leakiness in the brain’s blood vessels, causing oedema (brain swelling) in the early stages of radiation therapy. Dr Laperriere explained that in his experience, oedema tends not to occur after the first three or four fractions (doses of radiation) and is usually mild and self-limiting. In patients who are taking steroids, oedema is rare. With large tumours that cannot be resected surgically, however, swelling can lead to a raised intracranial pressure crisis. Pseudo-progression can also occur following radiation therapy, especially in glioblastoma and typically between four and twelve weeks, which is when the tumour appears to worsen on brain imaging studies as the cancer cells die. Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

State of the art: systemic treatments DR MARK GILBERT is Chief of the NeuroOncology Branch at the National Institutes of Health (NIH) in the USA. An expert in clinical malignant glioma research, he gave a whistle-stop tour of advances and revelations in the systemic treatment of primary malignant brain tumours.

Key points: Molecular testing has revolutionised our understanding of brain tumour types, revealing hitherto unknown classifications of brain tumours – each with their own clinical behaviour. n Discovering the role of the IDH genes – which correlates with a better prognosis when mutated – has been critical in this advancement, revealing how the microscope (histological) appearances of tumour tissue alone are no longer sufficient for categorising brain tumours. n Studies have shown that the molecular signature of a tumour can serve to guide treatment and predict prognosis. n The discovery in 2005 that temozolomide chemotherapy significantly improves survival in glioblastoma was a watershed moment in brain tumour therapy, and highlights the importance of wellcontrolled randomised trials for testing new treatments. n The first trials of PCV chemotherapy in newly diagnosed anaplastic oligodendroglioma showed no benefit, but later analysis based on genetic mutations in the tumours revealed that the therapy does indeed have a significant effect on tumours with a specific genetic mutation (deletion of the 1p/19q chromosome segments). n Bevacizumab (Avastin) showed short-term benefit in glioblastoma in early clinical trials, leading to its accelerated approval by the US Food and Drug Administration (FDA). Subsequent analysis revealed that it did not improve overall survival, further highlighting the importance of thorough clinical testing of new agents. n Immunotherapies are an exciting, new brain tumour treatment approach, and many of these – n

Photos by MVF Studios

which can be divided into ‘classic’ and ‘neo-classic’ approaches – are under investigation. n Although data from several phase 2 trials of an anti-EGFRviii vaccine (a type of immunotherapy) provided early suggestions that the treatment is effective in this subset of malignant brain tumour patients, a subsequent large, randomized clinical trial failed to show benefit, highlighting the need to confirm early findings. n A dendritic cell vaccine (DCVax) has shown promising results in early clinical trials, although well-conducted phase 3 trials are called for before drawing definitive conclusions. n There can be pitfalls in clinical trials of immunotherapy - as was demonstrated in a trial of the checkpoint inhibitor nivolumab - which can lead to ‘pseudo-progression’, an apparent worsening of a brain tumour on scans despite destruction of the tumour

Above: Chief of the Neuro-Oncology Branch at the National Institutes of Health in the USA Dr Mark Gilbert

Molecular testing has advanced both the diagnosis and treatment of brain tumours. Diagnosis has previously been based on how brain tumour tissue appears under a microscope (its ‘histology’). These histological classifications included: n astrocytoma (grade 2), which has historically been termed ‘low grade’ and sometimes erroneously labelled ‘benign’

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: Dr Mark Gilbert highlights recent revelations in the field of neuro-oncology

anaplastic astrocytoma (grade 3), which is an infiltrative tumour and impossible to completely remove n glioblastoma (grade 4), with highly active tumour cells alongside cell death and necrosis n oligodendroglioma, in which cells have a ‘fried egg’ appearance and which was considered rare in the 1980s and can be either grade 2 or grade 3 “A scientific paper published in the New England Journal of Medicine in 2009 was a huge advance in our understanding of brain tumour types.” Dr Gilbert said. “Data and findings from the study showed that the prognosis of glioma patients was markedly better when their tumour contained a mutated IDH gene, compared to those whose tumours had the unaltered gene (termed ‘wildtype’).” A 2015 paper, written by members of the Cancer Genome Atlas Research Network and published in the New England Journal of Medicine, was a multi-platform analysis of lower grade gliomas. It revealed that there are three molecular classes of lower-grade gliomas, based on their genetic and molecular profile, each with their own clinical behaviour. These published categories were based on the mutation status of IDH and TP53, and deletion of the short arm of chromosome 1 (1p) and the long arm of chromosome 19 (19q). Initial results published in 2006 of a series of clinical trial research papers for the treatment of newly diagnosed anaplastic oligodendroglioma showed no difference between groups. But later re-analysis in 2013, using genetic data from the tumours, revealed that patients who had deletion of 1p/19q in their tumours did indeed live longer when in the group receiving PCV chemotherapy n

alongside radiotherapy compared to those who received radiotherapy alone. “The results showed 1p/19q status as a predictive marker for therapy as well as being a prognostic marker for overall outcome. Findings such as these have been a revelation in how we understand different brain tumours. Patients with anaplastic oligodendroglioma and 1p/19q co-deletion should no longer be treated with radiation only. Moreover, the findings underscore the importance of tumour tissue collection.” Describing anti-angiogenic therapy (namely, bevacizumab/Avastin), Dr Gilbert explained the rationale behind the treatment. Glioblastoma tumours stimulate the growth of many new blood vessels around them (angiogenesis). By blocking this blood vessel development, tumour expansion might be prevented. Initial tests with the drug bevacizumab were encouraging. Dramatic brain tumour shrinkage was seen on brain scans following treatment. The drug was therefore given accelerated approval by the United States Food and Drug Administration (FDA). Long-term results were different, however. Results from a double-blind placebo-controlled trial (RTOG 0825) of bevacizumab in newly diagnosed glioblastoma, published in 2014, revealed that the treatment did not actually improve overall survival. Unlike the earlier anaplastic oligodendroglioma trial of PCV chemotherapy, in this study all tumour samples had been molecularly tested. Was there a specific subgroup that would benefit? Analysis of the different molecular subgroups revealed this not to be the case. But did patients feel better? Comparing quality of life and mental functioning data between those who received bevacizumab and those who received a placebo, patients who were given the drug fared worse. “This important trial was also a revelation,” Dr Gilbert said. “It underscored the importance of randomised, placebo-controlled trials of new drugs that both collect all molecular data of tumours and incorporate clinical outcome assessments (such as the patient’s symptoms and overall mental state).” Dr Gilbert then explored the role of immunotherapy which is the process of stimulating the body’s immune system to attack a cancer. He listed some of the different types of immunotherapy that are being investigated. These Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

can be divided into ‘classic’ and ‘neo-classic’ approaches. Classic immunotherapies include: n vaccines, such as dendritic cell vaccines (ie DCVax) n immunomodulation agents, which include checkpoint inhibitors like ipilimumab and nivolumab n and cytokine treatments, such as interferons and interleukins. Neo-classic immunotherapy approaches include: n oncolytic viruses (viruses designed to directly attack tumour cells, such as engineered adenovirus and herpes viruses) n signal transduction modulators like trastuzumab (Herceptin) and anti-angiogenic therapies Dr Gilbert described the ACTIVATE clinical trial of an anti-EGFRviii vaccine (PEP-3-KLH) in brain tumour patients. Even though individual clinical trial results showed an improvement over historical controls (data from medical records of previous patients), a subsequent large, randomized trial failed to show

benefit, highlighting the need to confirm early findings. Dendritic cell vaccines – which involve extracting a patient’s immune cells to program them to target the brain tumour – are also under investigation. Results gathered so far appear promising when compared to historical controls, but randomised controlled trials are needed. “There are potential pitfalls in immunotherapy trials. For example, checkpoint inhibitors are immunomodulatory drugs that are all over the news, thanks to their effectiveness in treating melanoma skin cancer,” Dr Gilbert said. He then showed a series of MRIs of a patient receiving the checkpoint inhibitor nivolumab. The scanned images appeared to show a worsening of the tumour. However, biopsy of the tumour tissue revealed ‘the worsening’ to be ‘pseudo-progression’ – an inflammatory response in the brain that looks like tumour growth but isn’t. Another revelation!

An introduction to the Rare Tumor Patient Engagement Network DR GILBERT was joined at the podium by DR TERRI ARMSTRONG, a Tenured Senior Investigator, also in the Neuro-Oncology Branch at the Center for Cancer Research in the National Institutes of Health (NIH).

Above: Dr Terri Armstrong (left) and Dr Mark Gilbert (right) introduced to the Summit participants the Rare Tumor Patient Engagement Network, a project of the US Cancer Moonshot Program 22

Photos by MVF Studios

Dr Gilbert and Dr Armstrong introduced the Rare Tumor Patient Engagement Network whose mission statement is: “To develop a network of clinical/research sites and an accompanying patient and advocacy interface to provide state-of-the-art expertise and personalized healthcare and data to patients with rare tumours, while building databases and tools to advance research on new treatments for rare tumours.” Examples of the challenges that rare tumours present are that: n they are often diagnosed at a late stage n most medical centres have limited experience with rare tumours n there is typically no accepted standard of care for such tumours n patients can feel extremely isolated due to the limited care and advocacy support available. “Developing an easily accessible, national and international patient engagement network for rare tumour research and patient care will help address patient needs and increase patients’ access to research,” Dr Armstrong said.

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

She and Dr Gilbert also explained some of the challenges that face researchers: n It takes a long time to gather patients with rare brain tumours for clinical trials, and basic research can only detect strong effects. n Fund-raising to pay for research is challenging. n There are limited, pre-clinical research tools (such as tumour cell lines that can be grown in the lab). A collaborative, well-funded research network for such rare tumours would help promote the development of new therapies and standards for patient care. The Rare Tumor Patient Engagement Network aims to tackle these research and patient challenges. Brain tumours are diverse. The WHO Brain Tumour Classification describes over 150 different primary cancers of the brain and central nervous system. “Even though all primary brain tumours would qualify as ‘rare’ or ‘orphan’ diseases, some have an incidence of fewer than 1,000 cases per year,” said Dr Armstrong. The US National Institutes of Health (NIH) is uniquely suited to study these conditions, and the NIH Brain Tumor Initiative will utilise its available resources to provide travel support for patients (so that no cost is incurred by them) and laboratory and clinical data support, while the NIH social media networks will help spread information and encourage patient engagement. The initiative will use a model that has proved successful in the Collaborative Ependymoma Research Network (CERN). This involves partnering advocacy with basic, translational, clinical and outcomes research including molecular, genetic and lab-based researchers working together with results from all streams ultimately forming a consistent conclusion. The model also fosters an international, collaborative effort. CERN has operated through 17 international sites to recruit the greatest number of patients and to encourage innovation and creativity. One of the projects operating under the CERN Foundation established a definitive molecular subgrouping of ependymoma, made possible by the initiative’s ability to collect sufficient tumour samples and patient data. Furthermore, the collaborative research approach is able to rapidly screen thousands of existing drugs to successfully discover agents that have the potential to treat ependymoma. Another CERN project examined the effect of the disease on patients, revealing for the first time the

magnitude of symptoms, disability, quality of life, types of treatment offered, and the financial pressures faced. One of the key issues for further discussion with the participants at the IBTA Summit was the question of how to reach and engage rare tumour patients most effectively, and how to maintain that engagement. As part of the Rare Tumor Patient Engagement Network a Brain Tumor Collaborative Consortium, made up of many cancer centres, will recruit patients over a wide area. The NIH Clinical Center (a research hospital based in Maryland, USA) will transport patients to the NIH Clinical Center for free so they can enrol in trials that, otherwise, they would be unable to participate in due to cost. The NIH National Cancer Institute along with the Clinical Center will help to coordinate clinical trial operations from around the world, while analysing and researching aggregated data. Not only is the goal of the Network to accelerate understanding and treatment of rare cancers, but to provide resources and infrastructure which is sustainable in the future. DISCUSSION Dr Thierry Muanza (Canada): “How might patients who are being treated in the community benefit from molecular analysis, and how would they be stratified?”

Above: Assistant Professor Dr Thierry Muanza from McGill University in Montreal is also a member of the Board of Directors of Brain Tumour Foundation of Canada

Dr Gilbert: “Clinical studies will lead to improving our understanding of predictive markers for brain tumours, and these processes will become more cost-efficient when we know which tumours a treatment doesn’t work for. Ultimately, health care costs will reduce as Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

testing becomes more streamlined. The hope is that tumours will be treated initially based on accurate histological subtyping and then followed up with molecular analysis.” Two questions were asked about bevacizumab treatment: (1) “Bevacizumab costs many thousands of dollars in some countries. Should the FDA (US Food and Drug Administration) rescind its approval of the therapy given the scientific data we now know about?” Dr Gilbert: “ A subgroup of patients do get some symptomatic relief from the treatment, but there was no survival benefit.” (2) “Does bevacizumab represent an ‘expensive steroid’?” Dr Gilbert: “I reiterate the conclusions of the trial data which were incontrovertible and told us that there was no benefit when tested in double-blinded trials [a trial when neither the doctor nor the patient know whether they are receiving treatment or placebo].” Dr Hariz Hassan (Czech Republic): “How should brain tumours be grouped and treated, given that they are often heterogenous, with many different cell types? And should there be a greater focus in clinical studies on patient quality of life? Dr Gilbert: “Molecular subtypes are continually being discovered – there are nine ependymoma molecular subtypes, for example, even though they all appear the same under the microscope. There is a pressing need for molecular analysis of all tumours

Above: Dr Hariz Hassan is a radiation oncology resident in Prague, Czech Republic

to be mandated so that they can also be analysed at a later date when scientific understanding has developed further. Achieving the methods and developing the international networks that would make this possible is one of our overarching aims.” Dr Terri Armstrong: “Quality of life measures definitely need to be incorporated into clinical studies as a secondary benefit after survival outcomes. However, using both ‘endpoints as a marker of treatment success will set a very high bar for any new therapy. We are currently working on ways to fully incorporate quality of life endpoints into clinical trials.”

Summary of the Rare Tumor Patient Engagement Network Goals: 1) Develop shared infrastructure across national/international sites to study selected rare paediatric and adult tumours, with specific attention to connecting patients and investigators through advocacy groups and other means. 2) Collect and analyse all available data on selected rare tumours which are to be shared with patients and their families, as well as researchers studying risk and disease trajectory with the goal of developing personalized therapies. 3) Develop a network to translate findings to new clinical trials for cancer-directed therapy and symptom management and improve access to existing clinical trials for those with rare tumours.

Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Plenary Session 2 Let’s talk about…adult brain tumours: early, accurate diagnosis is key SARAH LINDSELL is Chief Executive Officer of The Brain Tumour Charity in the UK. The charity presently has two main goals: to double survival in brain tumours and to halve the harm caused by them.

Above: The Brain Tumour Charity (UK) CEO Sarah Lindsell presented the HeadSmart programme for early diagnosis of children with suspected brain tumours

“A pressing priority in the UK is to achieve early and accurate diagnosis of brain tumours,” said Sarah Lindsell. “A child might be sent between home, general practitioner, hospital emergency departments, opticians, and paediatricians before the correct diagnosis is ultimately made.” The medical profession demands evidence-based peer-reviewed research before standards of care will change and so in response to this need, The Brain Tumour Charity worked with the medical community to devise new evidence-based guidelines on early diagnosis. Driven by the concerns of families and healthcare professionals about the lengthy time taken for accurate brain tumour diagnosis in children and young people, these efforts culminated in the HeadSmart initiative. HeadSmart was built on evidence-based diagnosis and referral guidelines published in 2007 by Professor

David Walker at the University of Nottingham. The public HeadSmart campaign was launched in 2011. The overall goal of the initiative is to reduce the average diagnosis time of brain tumours in children to four weeks or less so that diagnosis times would at least be on a par with other major developed countries. Over the course of the HeadSmart initiative, there have been some dramatic reductions in the time it takes for a child to be correctly diagnosed with a brain tumour. When the healthcare professional guidelines were released in 2007, there was an average of 13 weeks between initial presentation and diagnosis. This fell to 9.1 weeks by 2011 when the HeadSmart public campaign was launched. Sarah explained that diagnosis times have fallen even further - to 6.9 weeks in 2013 – and have continued to decline gradually. “The campaign has so far been a success for the under 12s with the average diagnosis time now less than four weeks, meeting the campaign’s target. But for teenagers, the diagnosis time is still much higher, at 12 weeks. For this reason, the HeadSmart campaign was relaunched in 2017 to better target teenagers – the hardestto-reach age group. The overall diagnosis time in this age group is projected to be under four weeks by 2020.” The success of the HeadSmart campaign led The Brain Tumour Charity to consider expanding the initiative to include adults. “We initially received resistance from the medical community, who were again calling for evidence,” said Sarah Lindsell. “The charity therefore opened a funding call for applicants to submit ideas on how to promote early diagnosis in adults. Two research projects were established to better understand the diagnostic pathway for adults with brain tumours in the UK: Dr Paul Brennan at the University of Edinburgh (Scotland) has been looking at referral data to uncover common delays in the healthcare system; and Dr Fiona Walker at the University of Cambridge (England), has been interviewing patients to find out their diagnostic experiences.” An awareness campaign to reduce diagnostic delays for adults will be launched by The Brain Tumour charity in 2018. Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Let’s talk about... brain tumours in the Czech Republic DR HARIZ HASSAN is a radiation oncology resident in Prague. He is originally from Malaysia. As well as professional experience working in the field of brain tumours, he also has personal experience, having lost a sister to a brain tumour.

Above: Dr Hariz Hassan: “Being at the Summit has given me a very new experience - being surrounded by patient advocates is quite different to my professional life…”

“My sister died of a brain tumour at an early age,” said Dr Hassan. “And I remember that when I was a child, I wrote down that when I grew up I wanted to be a neurosurgeon. This was at a time when my friends were dreaming of being firemen and astronauts.” Dr Hassan has lived in the Czech Republic for eleven years. “Being at the Summit has given me a very new experience – being surrounded by patient advocates is quite different to my professional life as I normally see people from the other side.” Since 2006 the Czech Republic has been considered a developed country and there is a high quality of life. Residents prefer the Czech Republic to be called a ‘Central European nation’, rather than being considered in ‘Eastern Europe’. The country has a high-quality universal healthcare system, ranking two places above the UK in the 2016 Euro Health Consumer Index. Healthcare is paid for by 26

Photos by MVF Studios

mandatory employment-related insurance plans and the government covers costs for people who are unemployed. Everyone in the Czech Republic has a GP (family doctor) and although private hospitals exist, care is primarily socialistic. The country also has highquality cancer and death registry data. Rates of brain tumours are equivalent to those in the USA, although mortality in the Czech Republic is higher. For a country of just 10.6 million people, there are 15 comprehensive cancer centres offering brain tumour treatment. The first neurosurgery clinic opened in 1953, and although adults are well catered for – there are four neurosurgery services in Prague alone, for example – care for paediatric patients is still lacking. The two centres specialising in paediatric brain tumour treatment are far apart, making care difficult for families who do not live near either centre. There are a good number of auxiliary services for cancer care, which include a CyberKnife facility in Ostrava, and a Gamma Knife unit in Prague, in addition to a proton therapy centre (which was the subject of a high-profile case in the UK of a child, Ashya King, who travelled to Prague for brain tumour treatment). Dr Hassan explained that the largest NGO (nongovernmental organisation) for cancer patients is the League Against Cancer Prague (LPR), which has 58 member organisations. However, in the Czech Republic there are no NGOs dedicated solely to brain tumours and no support groups specifically for brain tumour patients, caregivers and families. “I entered oncology because I wanted to offer more continuity of care to patients, but this has not always been possible,” said Dr Hassan. “I was extremely moved when I met a woman who was caring for her husband, who had a brain tumour, while also raising her children. I felt she was missing support, and there wasn’t even a facility for her to call for a specialist nurse or for extra support. So I’m in the early phases of establishing a support group for brain tumour patients in the Czech Republic. Other cancers have support groups but brain tumours do not. We have high quality personnel, but there is still a great unmet need for brain tumour patients in our country.”

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Let’s talk about... brain tumours in Mexico DR ALEXANDRA DIAZ ALBA was given a scholarship for a fellowship in clinical neurooncology at L’Hopital de la Pitie Salpetriere in Paris. In 2015, she returned to Mexico where she is a neurologist working with brain tumour patients and their families.

Above: Neurologist Dr Alexandra Diaz Alba from Mexico urged everyone to “build bridges, not walls, with the rest of the brain tumour community and wider world…”

Above: Dr Diaz Alba said that very few people in her country can afford to pay for the medical care they need after a brain tumour diagnosis.

“I’m really delighted to be at the IBTA Summit, and want to use this opportunity for building bridges, not walls, with the rest of the brain tumour community and wider world,” said Dr Diaz Alba to resounding and supportive applause from the audience.

Mexico is the second most populous country in Latin America, and the 11th worldwide. The official language is Spanish, but there are more than 68 dialects. “Ours is a young country with 30% of the population under 15 years of age and only 6% aged over 65. In Mexico, it’s very difficult for many people to access medical assistance,” Dr Diaz Alba said. “Healthcare is either paid by private insurance, which is too expensive for most; through social insurance (which most people don’t have) via an employer or by paying medical fees directly. The reality is that few people can afford to pay for the medical care they need after a brain tumour diagnosis. Five capsules of 100mg of temozolomide cost Pesos 9,401 (US $522) while the minimum daily salary is just 80 pesos (US$4). It would take someone without private insurance or social insurance 117 days of work to pay for half a month’s treatment.” There is also a lack of specialist brain tumour care in Mexico. There are 41 official oncology centres across the country, but few have experience with brain tumours. There are just ten neuro-oncologists in Mexico, and there is a shortage of drugs across Latin America, such as the chemotherapy agent lomustine. Furthermore, said Dr Diaz Alba, there are other substantial problems for people in Mexico: n inequity – only 3% have private medical insurance and 75% do not have equal access to medical assistance n lack of chemotherapeutic agents – neither BCNU (carmustine) nor CCNU (lomustine) are available anywhere in Latin America Dr Diaz Alba said: “There are no easy solutions but we are working to improve the situation for brain tumour patients and their families/caregivers. We’re hoping to strengthen links with other countries, and to learn from them about how best to tackle the challenges we face. For example, telemedicine has the potential to offer a low-cost means for people to find a doctor in their local community and for the exchange of ideas between practitioners. We are teaching neurologists and oncologists how to best treat people with brain tumours. Sadly and all too often, brain tumour patients are told to ‘go home because there’s nothing else to be done.’ ” Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Let’s talk about... brain tumours in Ghana DR TEDDY TOTIMEH is a consultant neurosurgeon at the Greater Accra Regional Hospital in Ghana and a part-time lecturer in neuro-anatomy.

Above and right: Dr Teddy Totimeh is a consultant neurosurgeon in Accra, Ghana

“Ghana is on the Greenwich Meridian where it crosses the equator and so it is from the centre of the world that I bring greetings!” Dr Totimeh said jovially as he began his presentation on brain tumours in Ghana. Ghana has a population of 26 million people served by 18 neurosurgeons who are concentrated in urban areas. There are three major operating centres, although the northern parts of the country are poorly catered for: only one neurosurgeon is based in the north so most brain tumour patients must travel to the centre or the south of the country to receive treatment. The Ghanaian medical community’s attention has historically been on infectious diseases (cholera, malaria, HIV/AIDS, etc), but as this focus shifts away from communicable conditions, the true rate of brain tumours will become more apparent. Meningioma and glioma account for the majority of brain tumour cases (60%) in Ghana. In children, pilocytic astrocytoma and ependymomas are the most common types of brain tumours. Dr Totimeh explained that people with brain tumours face considerable financial hurdles in receiving treatment. “Brain tumours are not covered by the country’s national health insurance system, meaning that patients must pay all their medical costs. Brain tumour patients 28

Photos by MVF Studios

are therefore forced to either raise the money themselves or leave the country to seek treatment elsewhere. A significant number travel to South Africa and India, although there is currently a long queue for treatment in these countries. Nevertheless, there are still some patients who can afford to pay for treatment.” Neurosurgeons are typically inundated with work because there is a high incidence of head injuries from road traffic accidents, a heavy workload from developmental disorders in children and the presence of infectious disease affecting the brain and spinal cord. Brain tumours are not the highest priority. Recruiting and replacing neurosurgeons is a challenge, owing to the high cost of training and brain tumours’ low priority. There is just one medical centre in Ghana training neurosurgeons and two centres offering training for radiotherapy. “Brain tumours are going to increase in importance as life expectancy improves, which now stands at 64 years, up from 57 twenty years ago. It’s unclear whether brain tumours will be added to national health insurance coverage but things don’t look reassuring because the system has been in debt for the last two years.” There has been a lot of private company investment in Ghanaian infrastructure, so, the private sector may be key to improving Ghana’s brain tumour care.. In addition to building new centres, which could provide molecular testing of brain tumours (not currently available), Dr Totimeh hopes that investors will commit to staffing and training personnel. He is currently working with fellow doctors and entrepreneurs who share this vision of building centres of excellence, which may also serve as a wider African resource.

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Summary of the Sub-Saharan Africa Neuro-Oncology Collaborative (S-SANOC) meeting on 19th October KATHY OLIVER is Chair and founding Co-Director of the International Brain Tumour Alliance (IBTA). She and her husband, Gordon (Co-Director of the IBTA) had a son, Colin, who was diagnosed with a brain tumour at age 24 in 2004 and passed away, age 32, in 2011.

Above: Kathy Oliver is Chair and Co-Director of the IBTA

Following on from Dr Teddy Totimeh’s report on brain tumours in Ghana, Kathy Oliver summarised the Sub-Saharan Africa Neuro-Oncology Collaborative (S-SANOC) planning meeting, which took place on 19th October immediately before the Summit and which was also held at The Tower Hotel, London.

“Yesterday, at the first S-SANOC meeting, I learned a new African proverb,” Kathy said. “The proverb goes like this: ‘If you want to go fast, go alone. If you want to go far, go together. This embodies the ethos of the IBTA and certainly, we as an international community, can achieve many great things when we work collaboratively.” The S-SANOC meeting was a small, pre-Summit event two years in the planning. It was run in partnership with the Society for Neuro-Oncology (SNO) and the Zimbabwe Brain Tumour Association (ZBTA). Inspiration and impetus for the S-SANOC initiative arose out of the numerous conversations between Kathy and Christine Mungoshi (ZBTA Director) whom Kathy had met and worked with closely since 2006. Kathy was also inspired by stories from other brain tumour patient advocates in this part of the world. Sub-Saharan Africa is a vast area of huge diversity, and one that creates incredible challenges for brain tumour patients, their families, and their caregivers: n Many African countries have little or no cancer registry data and/or effective systems for data collection. n There is a widespread lack of infrastructure. n Care is very poor in many areas. A paper published in 2013 in the journal Lancet Oncology reports that fewer than 13 countries in the region have access to cancer treatments and morphine. Below: Participants at the sub-Saharan Africa Neuro-Oncology Collaborative (S-SANOC) meeting came from 16 countries

Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: S-SANOC meeting delegates from left to right: Pastor Wilson Mugarura, Dr Alan Davidson, Kathy Oliver, Dr James Balogun, Dr Teddy Totimeh, Dr Thierry Muanza, Christine Mungoshi, Dr Edjah Nduom, Dr Patrick Bankah

According to the RARECARE definition, brain tumours are considered ‘rare caners’, because the annual incidence is less than 6 cases per 100,000. Taking this rarity into account, along with the diagnostic challenges that brain tumours present, neuro-oncological diseases are competing for precious resources in Africa, a region of the world where there are many other serious and more prevalent conditions. Kathy explained that there is great unmet need in subSaharan Africa and the IBTA has a moral obligation to take constructive action. “So, together with Christine Mungoshi, we at the IBTA hatched a plan. We were very fortunate that the Society for Neuro-Oncology was also interested

Above: Participants at the S-SANOC meeting enjoying a preconference dinner together. Front row, left to right: Anita Granero (IBTA Senior Advisor and Oscar’s Angels, France), Mary Lovely (IBTA Senior Adviso, USA), Jean Arzbaecher (IBTA Senior Advisor, USA), neurosurgeon Shungu Ushewokunze (UK). Back row: Dr Edjah Nduom (USA), Dr Patrick Bankah (Ghana), neuropathologist Jason Hume (USA), Gordon Oliver (Co-Director, IBTA), neurosurgeon Teddy Totimeh (Ghana)

Above: S-SANOC dinner guests, left to right: Irene Azong-Wara (founder of Jacob’s Hope Foundation, Cameroon), Chas Haynes (Executive Director, Society for Neuro-Oncology, USA), Chris Tse (IBTA Senior Advisor, New Zealand), Bonita Suckling (founder, Rainbows and Smiles, South Africa)

Above: Dr Daniel Fulkerson is an Associate Professor of Neurological Surgery at Indiana State University in the USA Right: Pastor Wilson Mugarura, a brain tumour patient from Uganda, addresses the S-SANOC meeting 30

Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: Dr James Balogun is a neurosurgeon from Nigeria

in working in the region and they had invited applications for a grant for an educational course to be held in subSaharan Africa. So it made sense to work together.” The vision of the first S-SANOC meeting was to consolidate and unify efforts for helping brain tumour patients in Sub-Saharan Africa by bringing together key stakeholders to tackle challenges and provide practical solutions for the treatment, care and support of people living with brain tumours in this part of the world. The first S-SANOC meeting was attended by 33 participants representing 16 countries within and beyond Africa: n South Africa n Kenya n Togo n Ghana n Cameroon n Zimbabwe n Nigeria n Uganda n Tanzania n United States n Canada n United Kingdom n France n India n Australia n New Zealand A wide cross-section of individuals from different fields participated: neurosurgeons, specialist neurooncology nurses, leaders of patient advocacy groups in Africa and other regions, researchers, representatives of industry, a radiation oncologist, palliative care specialist,

Above: Neurosurgeon Dr Gelareh Zadeh is co-chair of the Society for Neuro-Oncology (SNO) International Outreach Committee

Above: S-SANOC session co-chairs Dr Brian Nyatanga (left) and Christine Mungoshi (right), Director of the Zimbabwe Brain Tumour Association

a neuro-pathologist, two brain tumour survivors and current and former caregivers to brain tumour patients. Kathy Oliver thanked members of the S-SANOC Organising Committee, and supporting organisations, individuals and sponsors, without whom the event would not have been possible: “This is a world-first in the field of neuro-oncology because never before have all of these important stakeholders met with representatives of sub-Saharan patient advocacy organisations to discuss improving outcomes for people with brain tumours in that region of the globe.” The S-SANOC initiative was also the launch pad for a unified sub-Saharan Africa brain tumour society. Some of the many wide-ranging issues that were discussed at the S-SANOC meeting were: n multidisciplinary approaches and access to treatment n palliative and end-of-life care Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: Executive Director of SNO Chas Haynes (left) and Gordon Oliver (right, Co-Director, IBTA), chaired a roundtable discussion at the S-SANOC meeting on “Practicalities and Goals” of a neurooncology course in sub-Saharan Africa

rehabilitation n psychosocial support n care of paediatric brain tumour patients n the role of patient advocacy organisations and allied healthcare providers n the role of cultural beliefs and traditional healers n encouraging the establishment of brain tumour patient support organisations in countries where they don’t yet exist n how to appropriately raise awareness of brain tumours in sub-Saharan Africa n training and educational initiatives for medical professionals n

Above: Kathy Oliver briefs the Summit participants on the subSaharan Africa Neuro-Oncology Collaborative (S-SANOC) planning meeting held in London the day before the IBTA Summit

mentoring n how to create a new, multidisciplinary learned society which can best serve the sub-Saharan Africa neuro-oncology community n brain tumour guidelines n developing appropriate protocols for brain tumour patients in the region n creating networks of excellence n creating bridges and networking opportunities with the wider world for training, equipment and patient support strategies Some countries take multi-disciplinary care for granted, but this is not the case in many African nations n

Below: IBTA Summit participants from sub-Saharan Africa and the USA, left to right: Luke Mungoshi (Zimbabwe), Christine Mungoshi (Zimbabwe) Wilson Mugarura (Uganda), Edjah Nduom (USA), James Balogun (Nigeria), Patrick Bankah (Ghana)

Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

where such care is sparse or non-existent. Allied health professionals and advocacy groups come in many forms, and each can have a part to play. Psychosocial care is essential for all brain tumour patients but the culture and social structure of many African nations mean that Western models may not be suitable. The S-SANOC group also discussed the role of traditional healers. Rather than consider their practices wholly unhelpful, the group concluded that moves towards integrating them with modern medicine could be helpful. Following the S-SANOC meeting in London, there will be a neuro-oncology educational course in subSaharan Africa supported in large part by a generous grant from the SNO Wilkins-Barrick International Outreach Course in Neuro-Oncology and in part by the generosity of other funders. Kathy praised the S-SANOC initiative: “After yesterday’s S-SANOC event, we all certainly have a better understanding from the experts about what is happening on the ground for brain tumour patients in sub-Saharan Africa. I’m really delighted that we were able to help kick-start the beginnings of a networked community between healthcare professionals and brain tumour patient advocacy organisations in the region. Importantly, there is a strong commitment from all S-SANOC participants to improve the situation for people living with brain tumours across sub-Saharan Africa. Yesterday, we also saw the dawn of a subSaharan Africa neuro-oncology society. It’s all very exciting so watch this space in 2018!” Finally, Kathy quoted the words of Atul Gawande, an American surgeon and public health researcher: “Better is possible. It does not take genius. It takes diligence. It takes moral clarity. It takes ingenuity. And above all, it takes a willingness to try.” “As a brain tumour community, we must nurture this “willingness to try”, so that change can be seen across sub-Saharan Africa,” Kathy concluded. DISCUSSION Prof Rakesh Jalali (founder, Brain Tumour Foundation of India and Neuro-Oncology Group lead, Tata Memorial Hospital): “While temozolomide is expensive in many countries, we are fortunate in India to have access to generic [non-patented] brands. Six cycles of temozolomide cost just US$50-60. We have been

involved in discussions with other countries, such as Thailand and The Philippines, so that they also have access to affordable brain tumour drugs. But these efforts have been somewhat thwarted by difficulties working with governmental bodies. I wonder if the IBTA and/or other brain tumour organisations could provide materials/supporting evidence to bolster our case?” Other delegates from developing countries said that corruption is also a major hurdle regarding the affordability of drugs and brain tumour therapies in their regions. Dr Alexandra Diaz Alba (neurologist, Mexico): Corruption is a particular problem in Mexico causing the price of drugs to be unreasonably high. Drugs are often purchased from sellers who offer the best ‘perks’ to the buyer, such as a ‘gifted’ car. It is an issue we, as a country, need to address. There must be a way to find a solution.” Petra Hoogendoorn (founder, Goings-On, The Netherlands): “The ready availability and widespread use of mobile phones across Africa may offer solutions for improving brain tumour care.”

Above: Petra Hoogendoorn (Goings-On, The Netherlands)

Dr Teddy Totimeh (neurosurgeon, Ghana): “A hotline with doctors was launched in Ghana by the mobile phone company Vodafone. It has proved popular, but its use has plateaued for reasons that are currently unclear. There are also teleconferencing schemes with healthcare professionals that have recently been set up, and I will be interested to see how effective they will be. I’m optimistic about the possibilities of internet technology combined with mobile phones.” Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: Dr Teddy Totimeh (Ghana)

Dr Alexandra Diaz Alba: “Doctors in Mexico are using email and the mobile messaging service WhatsApp to communicate with one another. GPs can send images to surgeons or neuro-pathologists, for example. Some neuropathologists and neurosurgeons use teleconferencing, such as Skype, for small discussion groups and decision-making, helping to overcome the problem of specialists often being based in different parts of the country. This has its limitations, though, because mobile phone coverage is poor in many regions of Mexico. No mobile phone service is currently being used with patients.” Above: Christine Mungoshi (Zimbabwe). Rosemary Wormington (Head of Support, Brain Tumour Support, UK) is pictured in the background

Above: Dr Alexandra Diaz Alba from Mexico 34

Photos by MVF Studios

Dr Mark Gilbert (Chief of the Neuro-Oncology Branch at the National Institutes of Health, USA): “I wonder whether old equipment, such as radiotherapy machines, could be recycled by donating them to hospitals in developing countries? This would be a “win-win” for all parties, as the donating organisation could claim tax relief for the sent equipment.” Christine Mungoshi (Director, Zimbabwe Brain Tumour Association): “Unfortunately, we had a disappointing experience of specialist equipment being sent to Zimbabwe from the UK. The equipment was left unused

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

due to lack of expertise in Zimbabwe and because no written manuals were sent with the machinery.”

so that they might also donate old equipment.” Dr Stuart Farrimond (Senior advisor, IBTA): “Several organisations presently work to co-ordinate donations of medical equipment to less-economically developed countries, a list of which can be found online via the World Health Organisation website.”

Above: Dr Edjah Nduom

Dr Edjah Nduom (neurosurgical oncologist, Surgical Neurology Branch of the National Institutes of Health, USA): “The African brain tumour community could work with companies who manufacture medical equipment

Above: IBTA Senior Advisor Dr Stuart Farrimond (UK)

Plenary Session 3 Helping patients and families be their own best advocate in their care DR TERRI ARMSTRONG is a Tenured Senior Investigator in the Neuro-Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health and Adjunct Professor at the University of Texas Health Science Center and MD Anderson Cancer Center, (USA) Dr Terri Armstrong has 28 years of experience in the direct clinical care of patients with central nervous system malignancies, and over that time she has garnered substantial experience as a nurse practitioner for people with brain tumours. “A brain tumour is a life-changing event and there may be little time between being given the diagnosis and the first surgery – often less than 72 hours. It is a frightening diagnosis and there can be little time for

planning and preparation,” Dr Armstrong said. “Patients often look up information online and there is the perception that they must make lots of decisions. Crucially, choosing which path to travel down is often done without anyone to help a patient navigate the best path. It’s important for people diagnosed with a brain tumour to know that they are not alone and that treatment is out there. Reach out to your family, friends and others to find knowledge, strength and courage.” Using a timeline depicting a typical brain tumour journey, Dr Armstrong illustrated specific time points - surgery, initial treatment, symptom management, possible recurrence, long-term follow-up and end-of-life - when an advocate can be most effective. The advocate’s role begins from the moment of diagnosis and before the first surgical procedure. A brain tumour is sometimes initially experienced as an acute Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: Dr Terri Armstrong from the Neuro-Oncology Branch at the National Institutes of Health (NIH), USA

Above: Dr Terri Armstrong: “A brain tumour is a life-changing event…and there can be little time for planning and preparation.”

event dealt with at local medical facilities where neurooncological expertise may not be available. The patient is rushed into the hospital and given emergency surgery. Ideally, and if possible, it may be better if the situation is dealt with as an ‘urgent’ procedure, which would offer the patient more time to consider their options and come to terms with the diagnosis. Before agreeing to surgery, patients and/or their advocate should ask some important questions of the neurosurgeon: n How many brain tumour patients with my tumour type do you operate on each year? n What is your experience in doing this operation? n Why is surgery needed? n How soon do I need the surgery? n What are the benefits and possible complications of the surgery? n How much of the tumour will be removed? Patients may be intimidated and so don’t ask the surgeon such basic questions. Advocates and patients should print a list of questions in advance to take to their appointments. “What follows needs to be a ‘team event’, with the patient in control,” said Dr Armstrong. “Crucially, the patient must know that they are in control.” Using the image of an American football team, Dr Armstrong explained that every team has a ‘quarterback’ (or team leader), and in this instance the ‘quarterback’ is typically a doctor – usually the oncologist or neurooncologist. In some countries this is the neurosurgeon or even radiation oncologist. The patient has options and can chose who they want as their ‘quarterback’.

Patients and/or their advocate can ask their primary care physician for recommendations about treatment centres. Other patients with a similar diagnosis and treatment plan may also be able to offer their recommendations and share their experiences. Patient advocacy organisations should also be able to provide information on treatment centres. It’s important to note that institutions described as ‘Comprehensive Cancer Centers’ (particularly in the United States) typically have a multidisciplinary team approach. When meeting the team leader (or ‘quarterback’), there are several important questions that should be asked of the doctor: n How many years have you been practicing? n What is your specialty? n Did you do a fellowship or specialized training in neuro-oncology? n Are you board certified? n Do you have any additional certifications? n What are your specific experiences of caring for brain tumour patients? n How many brain tumour patients do you treat in a year? n How many people with this specific type of brain tumour have you treated? n What are the goals of treatment? There can be a lot of variability in expertise. Dr Armstrong mentioned a patient whose doctor couldn’t even pronounce the word ‘ependymoma’ which is a type of brain tumour. She went on to say that: “It’s going to be hard; plan on asking for help without feelings of guilt. It’s important to keep copies of all medical documents

Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

(surgery reports, MRI scans, pathology reports and slides, etc), which can usually be obtained by signing a simple disclosure form. Make sure that the doctor’s office also has copies of these before your appointment.” Other important advice from Dr Armstrong included: n Keep a comprehensive list of medications and dosages n Keep a record of doctors’ names, addresses and telephone numbers so you can contact them personally. n Make a list of questions to take to every appointment. The average patient has three major issues they usually want to discuss, and it is best to write these down in order of priority. If something is particularly worrying or frightening this issue should be at the top of the list. n Ask a family member or friend to come to the appointment with the patient. That person can take notes which can be reviewed afterwards. n Always ask for written instructions regarding therapies or procedures. Repeat instructions back to the healthcare professional as you understand them. n Ask who you should contact if you have further questions or an emergency. n Designate one family member or other caregiver as a contact person so they can disseminate information to the rest of the family and friends if the patient doesn’t wish to do so himself/herself. n Avoid ‘doorknob questions’ - which are important issues only expressed when the appointment has nearly ended. Leaving such questions to the last minute means that the answer may have to be truncated and not as thorough as it would have been if asked earlier in the appointment.

As an aide memoir for patients and advocates, Dr Armstrong shared Dr Paul Haidet’s (Baylor College of Medicine) ‘ABC’ of talking to your doctor: ✔ Ask questions ✔ Be prepared ✔ Communicate concerns and desires Dr Armstrong emphasised that as an advocate, it is important to talk about what matters to the patient. For example, if a patient wants to attend a wedding, then it may be possible for treatments and appointments to be worked around this event. “Don’t be afraid to ask questions,” she said. “Sometimes the simplest things can be confusing, and professionals forget that things can be misinterpreted. It’s always okay to ask: ‘What does that mean?’ Similarly, feel comfortable asking the doctor about information found online.” Getting a second opinion is sometimes a sensible idea and this should be scheduled when there is a major treatment decision required. Patients sometimes seek second opinions from many countries. Seeking a second opinion should be done early. Most patients don’t have to make an urgent decision within one or two days, and so it is far better to get a second opinion in a timely way rather than feel unduly pressurised into a specific course of action. “A second opinion can also be a great way to become better educated about possible options,” Dr Armstrong said. “This doesn’t mean you’re rejecting your original clinician. There’s no obligation to accept treatment at a centre where you happen to be seeking a second opinion. Patients should ask their doctor for a referral for a second opinion should they want one. The National Cancer Institute has a list of designated second-opinion centres. Patient organisations may also be able to provide lists of specialist centers.” Other important areas where advocates can be of great assistance in helping patients get their personal affairs in order are: n making a will n preparing documents that will help others to make decisions for the patient (‘advance care planning’) if the patient is unable to make them n nominating a beneficiary n sorting out legal and financial paperwork. Left: Summit participants listen intently as Dr Terri Armstrong talks about helping patients and families be their own best advocate in their care Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

An advocate who can help organise these tasks enables the patient to carry on with their life and focus on fighting their condition. Decisions about the future and end-of-life planning are very personal and often situation-dependent. It is therefore important to have continuous conversations about care issues as circumstances (for example, level of disability/deficit and family situation) can change. There are many practicalities that advocates can assist with regarding treatment, some of which are: n driving the patient home after a treatment which might cause drowsiness n knowing what side-effects may result from a treatment, such as nausea, and what medicines are available to relieve it n awareness of whether any medicines need special storage n understanding an imaging (ie MRI) report n As with many other issues, patient groups can provide helpful information about treatments and their side effects. Dr Armstrong urged caution when using the Internet. Much online information is not vetted, websites at the top of the search results may not be the best sources and some may be advertisements. “I’ve met many patients who are worried about what they have read online. Similarly, most weeks I see at least one patient who thinks they have found a cure online. As an advocate it is always best to base your research on trustworthy sites from major established organisations.” Patients and advocates also need to understand prognosis including the likelihood of survival as well as what that survival will look like. Dr Armstrong suggested that good questions for an advocate to ask are: n What probable complications and long-term changes will occur? n What help will the person likely need after treatment? n How many people with this type of tumour survive five years or more? Since 2014, there has been a mandate in the USA for adult cancer patients treated with ‘curative intent’ to receive survivorship care plans. These are a treatment summary and a follow-up plan, which is designed to help patients understand what to expect post-treatment. Dr Armstrong is working with Dr Heather Leeper and The Society for Neuro-Oncology (SNO) to develop an adult brain tumour survivorship care plan template. [Ed note: Soon after the IBTA Summit, the Survivorship 38

Care Plan was published in the Journal of NeuroOncology Practice.] From work done by Carolyn Vachani called “6 Steps to Being Your Own Best Cancer Care Advocate”, Dr Armstrong summarised: 1. Be educated. 2. Communicate with your healthcare team. 3. No call is not necessarily good news! If a test is worth doing, the result is worth knowing. In busy practices a test result may get missed or never be received from the lab or radiology site. Don’t assume that if no one calls you, the results are normal. Call and ask for your results. 4. Create a binder to track appointments, treatment and medications. 5. Take your medication as ordered. 6. Keep all scheduled appointments. ‘Lost to followup’ is a term used in medicine to refer to a patient who doesn’t return for their follow-up visits. It happens too often, particularly when oncology patients get to the point of annual follow-up visits. Those follow-up visits are a chance to address any problems that may arise related to the cancer treatment, provide advice for life after cancer and detect any new problems. DISCUSSION Some questions in this discussion period included the significance of alternative and complementary medicine treatments. Dr Armstrong: “Many herbal therapies have unknown effects so are not necessarily benign. For example, we do not know whether marijuana oil interacts with chemotherapy. Alternative therapies should be something that we talk about. Most people adopt a ‘don’t ask, don’t tell’ attitude. The patient is always in control but we all have concerns that some therapies may cause harm. The NIH has created a website [https://nccih.nih. gov/] that lists herbal therapies alongside any known interactions with conventional therapies, in the hope that open conversation will be encouraged.” Dr Edjah Nduom (neurosurgical oncologist, Surgical Neurology Branch of the National Institutes of Health, USA): “Any surgeon worth their salt won’t mind you asking questions about their experience. If they start to bristle, then that should be a warning. Ask good, thoughtful questions – it will be one of the most important decisions of your life.”

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Understanding the role of the regulator DR ELIAS PEAN is Product Lead at the European Medicines Agency (EMA) in the Office of Oncology, Haematology and Diagnostics. He is a Doctor of Pharmacy and has worked for eight years with the EMA. Among his responsibilities, he has been involved in the evaluation of oncology products.

Key points: The European Medicines Agency (EMA) is the centralised body that governs the regulation of medical treatments across the European Union (EU), which covers 500 million people, in 28 Member States, who speak at least 24 different languages. n The EMA facilitates development and access to medicines, evaluates medicine applications for marketing authorisation, monitors the safety of medicines, and provides information to patients and healthcare professionals on human (and veterinary) medicines. n The EMA is not involved in the pricing of medicines, which is decided within individual countries. n The EU represents 27% of the global medicine market. n Brain tumour medicines are regulated by the Committee for Human Medicinal Products (CHMP), which is one of the EMA’s seven committees, and it appoints working parties to oversee specific areas. n Patients have a voice in many stages of the EMA approval process, although it has taken many years for them to be fully integrated and work is ongoing to involve them more. n The EMA prides itself on transparency and independence, and all agendas and documentation of the decision-making process are published online so that anyone can scrutinise them. n

The EMA is a body of the European Union (EU) – a political and economic union made up of 500 million people, in 28 Member States, who speak at least 24 different languages. Twenty-seven per cent of all global

Above: Dr Elias Pean, Product Lead at the European Medicines Agency (EMA)

medicine sales take place in the EU, and the EMA’s mandate is to protect both human and animal health. This involves: n facilitating development and access to medicines n evaluating medicine applications for marketing authorisation n monitoring the safety of medicines n providing information to patients and healthcare professionals on human (and veterinary) medicines. The EMA is not involved with pricing and reimbursement of therapies – this is decided in individual countries (and is sometimes even done on a regional level). “The EMA is a large organisation made up of 890 staff collaborating with a network of 4,000 scientific experts from across the continent. We have seven scientific committees and 28 working parties. We coordinate with 50 public health authorities. Decisions need to be made by bringing together all 28 countries,” Dr Pean said. There are two ways that medicines can be approved: (1) on a country-specific level or (2) for the whole EU. Most innovative medicines take the latter route. Regardless of the authorisation route, all products follow one set of common rules. The centralised process means that one medicine or treatment has one application, one evaluation, and one EMA authorisation which applies to all EU Member States. Following EMA approval, pharmaceutical companies are obliged to Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: The EMA’s Dr Elias Pean explains the roles that patients and patient advocates can play at the European Medicines Agency

market the drug in at least one of the EU countries. Seven EMA committees are involved in drug development and evaluation, each of which deals with a different sphere. These committees include: n Paediatric Committee (PDCO) n Committee for Orphan Medicinal Products (COMP) n Committee for Advanced Therapeutics (CAT) n Committee for Human Medicinal Products (CHMP), which is responsible for the scientific evaluation/authorisation of all medicines including brain tumour medicines. All EMA committees are made up of scientific experts and representatives from each Member State. Each of these committees has working parties focussing on different areas. The committees can choose to convene extra scientific advisory groups, such as an oncology or neurology advisory group, when more expertise is needed. It is not only pharmaceutical companies, but academics also, who can interact with the EMA on drug development. For rare diseases, such as brain tumours, it is possible for therapies to be given approval when there is less comprehensive data providing there is “sufficient positive benefit balanced against the risks.” Processes in the USA and other parts of the world have different mechanisms for approving medicinal treatments. Independence and transparency are key principles at the heart of the EMA approval process. All scientific experts are assessed to ensure they have no financial conflicts of interest. Two countries will always perform their own independent assessment of any medicine for which approval is sought. All minutes, agendas and documentation of the decision-making process are 40

Photos by MVF Studios

published so they can be scrutinised by the public. “Patients have a voice in many stages of the EMA approval process, but it has not always been that way,” said Dr Pean. “The EMA was established in 1995, and dialogue with HIV patients first took place in 1996. Since then, the COMP welcomed patients as full members in 2000, and a Patients and Consumers Working Party (PCWP) was created in 2006. A dedicated Patients and Healthcare Professionals Department was created in 2014.” By 2016, patients/consumers were involved with the EMA on 750 occasions – a tenfold increase over ten years. ‘Real life experience’ has been systematically included in the EMA’s regulatory output since 2017, and there are plans to further expand patients’ roles in the future. Most recently, the EMA conducted its first public hearing, where patients, caregivers, healthcare professionals and academia shared their experience with valproate, a medicine used in epilepsy, bipolar disorder and migraine. Today at the EMA, patients are involved in every step of the lifecycle of a medicinal product, including ‘orphan designation’ decisions, scientific approvals, marketing authorisations and drug evaluation. Patients are also involved in the review of information leaflets and safety information, which is distributed with medicines. “Patients can be recruited as representatives of the patient community, specific organisations, or acting as independent experts. The ways that patients engage with the process are varied and include face-to-face meetings, written submissions, committee meetings, conference calls and surveys.”

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Masterclasses For the masterclass sessions, World Summit participants were divided into two groups of around 45 people each. Masterclasses were 75-minute sessions focussing on individual themes. They were hosted by experts and provided opportunities to engage in small group activities and discussions.

Masterclass A What’s new in clinical trial design? The first masterclass was chaired by JENNY BAKER (IBTA Senior Advisor, UK), and led by DR NORMAND LAPERRIERE, Head of Ocular Oncology at Princess Margaret Cancer Centre, Canada, and Professor in the Department of Radiation Oncology at the University of Toronto.

Key points: Clinical trials are conventionally termed ’phase I, II and III’, each phase serving a different research purpose and needing to be completed in consecutive order before a drug can be sent for approval and then released onto the market. n Phase 0 trials are occasionally used to test a new drug in a small number of people to see how the drug is handled in the body. n Phase IV trials are conducted after a therapy is on the market to look for rare side effects/toxicities missed in phase III testing. n Conventional trials follow strict protocols and have a set minimum number of patients and predetermined outcome measures. Trials are costly and time-consuming to set up and there is typically a delay of two to three years between phases. n ‘Adaptive’ trials are a modern innovation that make use of advances in molecular testing and allow for conditions to be altered after a trial has started. Treatments can be tailored to the genetic make-up of an individual’s tumour, and dosages altered according to the results as they are collected. New drugs can be added, and n

ineffective therapies can be removed from the trial as it progresses. n Adaptive trials are generally considered more efficient and cost-effective – a phase II trial can progress into a phase III trial, for example, without stopping. n INSIGhT and GBM AGILE are examples of adaptive trials in brain tumours.

Dr Normand Laperriere gave a thorough and accessible overview of the different types and phases of clinical trials. After an explanation of traditional approaches, he explored new, innovative approaches that are being rolled out with experimental brain tumour treatments. Dr Laperriere first put participants at ease by stating that he is a lay doctor in epidemiology - medical statistics - and encouraged questions. Clinical trials are conventionally designed in phases - I, II and III - with each phase serving

Above: Set against the backdrop of the River Thames in London, the IBTA Summit masterclasses were a popular part of the 2017 IBTA World Summit of Brain Tumour Patient Advocates Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: Dr Normand Laperriere (Canada) facilitates the IBTA masterclass on “What’s New in Clinical Trial Design?”

a different and important function that must be completed successfully before progressing to the next phase. Phase I trials are designed to test the optimal dose of a new drug in human beings. Prior to this, a drug has been tested on animals. Phase I human trials are used to determine the dosing interval and route of drug delivery. The most common phase I trial design involves three patients given a starting dose of an experimental drug. Then the dose is increased and given to three more patients. This pattern is continued until a third of patients experience unacceptable toxicities, at which point the trial is halted. From these results the dose limiting toxicities (DLTs) and the maximum tolerated dose (MTD) can be established. Patients enrolled on phase I trials of cancer treatments are often those with advanced tumours who have exhausted all available therapies. The next stage of a phase 1 trial is to test the new drug on a larger number of patients who have a specific tumour type. This might involve 30 or so patients with advanced cancers. A phase II trial may enrol around 80 patients with a specific brain tumour (e.g. glioblastoma). Phase II trials are designed to assess the safety and efficacy of the drug. Some terms commonly used in brain tumour trials are: n ‘partial response’ which indicates a 50% tumour volume reduction on brain imaging n tumour ‘progression’ meaning that the tumour has grown by at least 25% Because there can be 10-20% variability in measurements due to differences in scanning angles, assessing response can be an imprecise science. The usual endpoints for phase II trials are: n response assessment 42

Photos by MVF Studios

Above: Masterclass formats – with small groups – enabled IBTA Summit participants to learn in an informal setting where questions, debate and discussion were encouraged by the masterclass facilitators. Pictured here is the masterclass on clinical trial designs.

progression-free survival (PFS) n overall survival (OS) n toxicity But previous clinical trials of the drug bevacizumab (Avastin) in brain tumours have revealed the limitation of conventional response measures. In addition, some patients who received the therapy showed ‘pseudoprogression’ on brain scans which falsely gave the appearance of tumour growth as a result of actual tumour death. A Phase III trial is the final stage of testing before a new drug can be approved as a safe and effective treatment and released onto the market. Phase III trials, also termed ‘randomised controlled trials’ (RCTs), represent the so-called ‘gold standard’ of drug testing. In these trials, two groups of patients with the same condition (e.g. glioblastoma) are randomly given either the new drug or an existing treatment. Five to six hundred patients are generally needed for phase III trials. These patients must be stratified according to their risk (e.g. by known prognostic factors, such as age) so that the two treatment groups contain people with equivalent starting prognoses. When comparing the outcomes of the two groups of patients, overall survival is traditionally the best measure of a drug’s effectiveness. Progression-free survival (the amount of time lived before the tumour grows) is not as good as a primary endpoint. Toxicity (also termed ‘adverse events’) is recorded for individual patients on a five-point scale, where 5 is death, 4 is a potentially life-threatening toxicity, and 3 is a severe reaction. Any adverse event scored at 3 or above is n

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

considered significant. All phase III trials of brain tumour therapies now include measures of patient quality of life. Two other clinical trial phases are less well-known. Phase 0 trials precede phase I trials and are tests of the new drug at a low dose in a small number of people (10-15). This type of trial tests the drug’s pharmacokinetics (how it travels through the body and is broken down). Phase IV trials are those that take place when a drug is already on the market. These are often performed by analysing large numbers of patient records several years after the medicine’s approval to look for rare sideeffects or toxicities not detected in phase III. The future of clinical trials Conventional trial procedures have set protocols, number of patients and outcome measures. Their shortcoming is that they don’t fully analyse the available results until all the data has been accrued. These limitations are particularly problematic for brain tumours, where gathering the required number of patients and meeting the pre-defined outcome measures can be very difficult. Dr Laperriere said: “Adaptive trials started approximately around the year 2000 and are the way of the future. As the name suggests, these trials do not have rigid protocols, but can ‘adapt’ to patients’ responses to treatment. Researchers can learn from the data as it emerges. They can alter the drug dose, and can drop or add an ‘arm’ (a cohort of people receiving a specific treatment regimen).” The randomisation ratio can also be changed (or ‘enriched’) in an adaptive trial, so that more people can join a treatment arm if the therapy appears to be having a beneficial effect. Or a treatment arm can be dropped completely if it is proving ineffective. Adjustments can be made without needing to halt the trial and seek re-approval for a new protocol. Initiating a trial for a new drug is bureaucratic, expensive, and typically takes two to three years. The versatility of the adaptive trial design has both ethical benefits and is generally thought to be more efficient. Rather than be restricted by the conventional phase I, II and III structure, an adaptive trial may move seamlessly from one phase to the next. For example, if a phase II trial is proving successful then the trial can continue into phase III while keeping the patients who are already enrolled on the trial. This is far more economical and spares a three-year lag between phases as well as saving the regulatory burden of gaining approval.

Why, therefore, aren’t all trials adaptive? Dr Laperriere explained that in the past, we didn’t have all the molecular markers and prognostic indicators that we do now, so an adaptive trial focuses treatment on those who are most likely to respond. “Adaptive trials have limitations, however. For example, the ability to shift patients away from treatments that appear to be ineffective may mean that long-term benefits could be missed,” he said. Dr Laperriere put the adaptive trial theory into context by running through various real-life clinical trial examples: Example 1 Starting with the well-known 2005 phase III trial of temozolomide in glioblastoma led by Dr Roger Stupp and colleagues, Dr Laperiere showed the survival results of the study on a table and graph. Those who received temozolomide and radiotherapy in combination had an average overall survival of 14.6 months, compared to 12.1 months for patients who received radiotherapy alone. At that time, it wasn’t known that the status of the MGMT promoter gene in the tumour could have an effect on prognosis. But later analysis uncovered that temozolomide chemotherapy is most beneficial for patients whose tumours carry a methylated MGMT promoter gene. Survival results from a clinical trial of elderly glioblastoma patients, published in 2017, supported this conclusion: the overall average benefit from temozolomide was three months – but in patients whose tumours carried an unmethylated MGMT promoter gene, temozolomide had no survival benefit at all. Dr Laperriere emphasised that it was lucky that the original Stupp trial had enrolled enough patients whose tumours happened to have a methylated MGMT promoter status for the benefit to be detected. “Otherwise, temozolomide might have been determined to be ineffective. This example thus demonstrates a limitation of not knowing the different individual factors that can affect prognosis. An adaptive trial design can make adjustments for known prognostic markers as they emerge, and make on-going alterations based on new discoveries.” Example 2 The next example Dr Laperriere discussed was of an adaptive clinical trial in breast cancer, which he said he chose because of its remarkably innovative and successful approach. The I-SPY 2 trial commenced in 2011 and was 43

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

designed to test potential chemotherapies administered after diagnosis but before first surgery. There are many different molecular markers (or ‘signatures’) in breast cancer that might influence prognosis and response to a given therapy. Dr Laperriere described how the trial worked. “It would be a nightmare studying each breast cancer subgroup, even with the large number of breast cancer patients there are. Instead, the I-SPY 2 trial screened a sequence of 12 drugs, assigning each patient to a therapy based on the molecular profile that should theoretically have the most effect.” Dosages and drug type are fine-tuned throughout the study and each patient’s findings used to inform how the next patient is treated. In this way, the researchers are able to hone in on effective treatments. So far, the trial is yielding positive results. I-SPY 2 has identified two agents that appear effective enough to progress through to phase III testing (I-SPY 3). This pioneering trial is also remarkable because it is a collaborative effort between major public bodies such as the National Cancer Institute in the United States and the US Food and Drug Administration, as well as eight private pharmaceutical companies, 16 leading academic centres, the Safeway Foundation, and patient advocates. Dr Laperriere presented other types of innovative clinical trials: Basket trials test drugs that target a specific genetic

mutation, irrespective of the cancer type, and enrol patients with various cancer types. Brain tumour patients whose tumour has a rare genetic mutation may be included in such a trial. Umbrella trials focus on a specific cancer type such as glioblastoma,. Patients are stratified according to their biomarkers. INSIGhT and GBM AGILE are examples of brain tumour umbrella trials currently underway. INSIGhT (INdividualized Screening trial of Innovative Glioblastoma Therapy) is a randomised phase II umbrella trial in newly diagnosed glioblastoma. The trial has four arms, with patients receiving either standard temozolomide and radiotherapy, or a regimen that includes one of four new agents. All patients are eligible for any of the treatments, but multiple interim analyses of results are performed to look for effects of the experimental drugs on specific biomarker/genetic tumour subgroups. The trial is also ‘adaptive’ because treatment arms can be stopped and new ones started when new drugs become available. Dr Laperriere also briefly described GBM AGILE (“Adaptive, Global, Innovative Learning Environment”), which is an adaptive trial for glioblastoma that is currently in development. This is a phase II-III adaptive ‘umbrella’ trial that will test experimental drugs for various biomarkers in glioblastoma. The trial will take place in centres in the US, Canada, Europe and Australia/ New Zealand.

Masterclass B The challenge of missing data PROFESSOR JEFF SLOAN (Professor of Biostatistics and Oncology at the Mayo Clinic, USA) and DR MADELINE PE (Specialist in Quality of Life at the European Organisation for Research and Treatment of Cancer/EORTC) in Brussels, Belgium) facilitated this masterclass. IBTA Senior Advisor CAROL KRUCHKO (Founding President of the Central Brain Tumour Registry of the United States/CBTRUS) chaired the session. Each of them was wearing a lab coat.

Key points: For the patient, sometimes participation in clinical trials can be an impersonal and intimidating experience. n Quality of life questionnaires are very important in clinical trials, and missing data present major challenges for researchers, who typically ‘impute’ missing values. n There are inconsistencies in how missing quality of life data are analysed in trials. Misinterpreting gaps can lead to incorrect conclusions. n

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: During the IBTA masterclass on missing data, Prof Jeff Sloan from the Mayo Clinic in the USA wore his suit jacket on one arm and his lab coat on the other to symbolise the conflict that can come with striving to be both a caring doctor and an effective clinical trial researcher

Prevention of missing quality of life data is key. Advocates can help by getting involved with the design and implementation of clinical trials, being the voice of the patient, and asking questions. n Patient advocates should be wary of believing headline clinical research results at face value without understanding how the trial was conducted. n

In this lively and engaging session, participants were greeted as they entered the masterclass room and were quickly ushered to their seats. They were pressed to sign a lengthy patient consent form and told to quickly complete a ‘quality of life’ assessment form without being given a realistic amount of time to read and consider the contents of the documents. Each participant was also given a small, numbered plastic cup with coloured ‘tablets’ (which, in fact, were the candy ‘M&Ms’). “Thank you for participating in our clinical trial,” said

Dr Pe, as she instructed the masterclass participants to quickly complete their paperwork. Prof Sloan then told all participants to take the ‘tablets’ they had been given before completing another questionnaire. All paperwork was then collected. This brief experience of a mock ‘clinical trial’ - albeit it, compressed into 20 minutes or so - was then concluded, with some participants refusing to complete the forms because they hadn’t had a chance to fully read them. “How did you feel?” asked Prof Sloan. “Did I care more about you as a patient or did I care more about your data?” An overwhelming response in reply from the participants was that it was an impersonal, uncomfortable and confusing experience. They felt pressurised to not ask questions and to sign a consent form they hadn’t been given time to read and understand. Prof Sloan: “Patients think differently about trial participation than researchers.” Dr Pe: “This role play was a demonstration of how trial subjects may experience a clinical trial, although Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: In a mock trial setting, each participant in the masterclass on missing data was given a small, numbered plastic cup with coloured ‘tablets’ (which, in fact, were the candy ‘M&Ms’)

Above: During the missing data masterclass, patient advocates were encouraged to get involved in the clinical trial process, to never be intimidated, and to ask questions

we exaggerated the scenario to illustrate our points regarding some of the challenges involved.” Prof Sloan: “There can be many pressures on doctors conducting trials. In addition to caring for the patient, there is a desire to gather important information from patients in tight time constraints while possibly wanting to satisfy the requirements of a pharmaceutical company funding the research. Even though a healthcare professional wants to care for people, their humanity can be pushed out amid the stresses and busyness.” Many participants agreed with the speakers that the lab coats, which are often worn by researchers, further intimidated them to comply with instructions. For the remainder of the masterclass, Prof Sloan wore his suit jacket on one arm and lab coat on the other, to symbolise the conflict that can come with striving to be both a caring doctor and an effective clinical trial researcher. Prof Sloan and Dr Pe explained that as patients and patient advocates, you have the right to ask questions and ask “Why?” when in any clinical research setting. “We should be working together, rather than contradicting each other,” said Prof Sloan, “and there may be a gap to be bridged. When patients do not understand what is happening to them or feel that they are not being valued as an individual, they tend to be reluctant to fully complete the trial. For example, they may not take all the medicines or complete questionnaires fully and accurately. This presents a major problem for analysing the research results because there will be missing/incomplete/ inaccurate data. We researchers can cause the problem ourselves if we don’t treat patients properly.”

The quality of life questionnaire that the Summit masterclass participants were asked to hurriedly complete was a genuine ‘linear analogue self-assessment’ form inviting subjects to circle a number on a scale of 0 to 10 for different questions about their physical, psychological and emotional well-being. 0 = “As bad as it can be”, 10 = “As good as it can be”. Dr Pe and Prof Sloan explained that these questionnaires are extremely important in all clinical trials because quality of life is often used as a secondary endpoint in a drug trial and this is one concrete way of incorporating the patient’s voice when assessing the risks and benefits of a treatment. Prof Sloan used the participants’ M&Ms clinical trial experiences to explain how randomised clinical trials are often organised and the pitfalls of analysing the quality of life results they produce. All trials need to have a primary goal, ie an endpoint. In this IBTA Summit mock clinical trial the so-called medical name for the M&Ms was “canuckabine”. In this simulation the primary goal was “To determine the effectiveness of taking canuckabine happy colors (blue and yellow) on quality of life. In this instance, participants were randomly assigned to “low-dose canuckabine” (blue M&Ms), “high-dose canuckabine” (yellow M&Ms), or a “placebo” group (brown M&Ms). Prof Sloan and Dr Pe explained that clinical trials must also have a “null hypothesis”. This is the expected outcome, based on current scientific understanding and an “alternative hypothesis”, which is what would be anticipated to happen if the drug had an effect. These hypotheses need to be determined before a trial starts

Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: Dr Madeline Pe of the European Organisation for Research and Treatment of Cancer (EORTC) helped facilitate the missing data masterclass and explained that quality of life (QoL) questionnaires are extremely important in all clinical trials because quality of life is often used as a secondary endpoint in a drug trial and this is one concrete way of incorporating the patient’s voice when assessing the risks and benefits of a treatment

so that researchers understand what data they need to gather and how to analyse them. In this IBTA Summit masterclass mock clinical trial of canuckabine, the null hypothesis was that “there will be no difference in quality of life scores across all treatment groups”. The alternative hypothesis was that “quality of life scores will be increased in patients treated with happy colours of canuckabine compared to the placebo neutral colour”. Prof Sloan and Dr Pe briefly described how the results from two or more treatment groups are statistically analysed to find out whether there are meaningful differences between the sets of data. These statistical tests produce a “p-value”, which indicates the likelihood of the differences being due to chance alone. When this mock clinical trial had been previously performed with Prof Sloan’s medical students, a “significant” p-value was set at a cut-off of 0.10 (a 10% likelihood that the difference was due to chance alone, based on the assumption that the null hypothesis was true). Any result that had a p-value less than this

number (0.10) would be deemed a “real” difference. Remarkably, when this mock trial was previously conducted, the yellow canuckabine had a statistically significant positive effect! Prof Sloan then displayed a table of the results on the projection screen. This showed that quality of life and mental well-being scores were significantly improved after taking the yellow pill, compared to the brown pill (p-values of 0.06 and 0.04 respectively). Physical wellbeing and fatigue were also improved but those differences were not ‘significant’ (p-values of 0.19 and 0.20 respectively). On the projection screen, a mock-up newspaper headline read how these results might be interpreted by the media: “Yellow M&Ms = better quality of life!”. Dr Pe and Prof Sloan posed the following questions:  1. “Are these significant findings real?” 2. Are there any design issues with this study?” 3. “Are the results convincing enough to advocate taking yellow M&Ms to improve quality of life?” A brief discussion with the masterclass participants concluded that it made no sense to rely on this study to advocate yellow M&Ms. Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: IBTA Senior Advisor Carol Kruchko (Founding President of the Central Brain Tumour Registry of the United States/CBTRUS) chaired the masterclass on missing data

Prof Sloan explained some of the pitfalls of the statistical analysis of data, and why patient advocates need to be aware of them. “Data mining”, for example, occurs when researchers gather large amounts of data then hunt for any result that has a low p-value, labelling it as “significant”. Prof Sloan said: “This happens more often in clinical trials than you might think. The statistically significant quality of life endpoint needs to be clearly defined before starting any clinical study to prevent this problem. Furthermore, the design of the trial is important. In the canuckabine ‘trial’ we conducted here today, there were very few participants and the difference could easily have been due to chance. P-values are important but are not the whole story, and a trial needs to have large numbers to make the most definitive conclusions. The easiest people to fool are ourselves.” In real life there is the added problem of missing data - particularly in quality of life assessments. A questionnaire that a patient forgot to complete cannot be done at a later date. Prof Sloan said: “Of course, not all missing data are problematic but a decision must be made as to whether or not they will have an impact on the conclusions. Unfortunately, it is not always clear how academics deal with missing data. A recent scientific summary showed that 35% of randomised controlled clinical trials published in major medical journals did not explain how much quality of life data were missing, and only 23% described how they compensated for the missing data. While there are various techniques to fill in the gaps, the best 48

Photos by MVF Studios

approach is to minimise all data loss in the first place. This can be achieved by improving staff commitment and education – half of data loss is because staff choose to not ‘bother’ the patient. Furthermore, the assessments should not be overly burdensome, unclear, or logistically challenging, all of which reduce the likelihood of a patient completing them.” Such goals are possible, Prof Sloan and Dr Pe insisted. At the Mayo Clinic in Rochester, USA, compliance rates in quality of life assessments are above 90% because the people conducting the trials sit down and talk to patients. Patient advocates are also invited to these discussions. Prof Sloan said: “Researchers typically guess what should be inserted in the missing data gaps using a variety of mathematical techniques. The greater the amount of quality of life data that are missing, the greater the possible error in a study’s conclusions. If there is less than 20% of missing quality of life data then the impact on the final results will be minor, but a greater proportion will probably have substantial impact.” Missing data may be “non-informative” (e.g. due to a nurse accidentally losing a questionnaire) or “informative” (e.g. because a patient is too sick to respond). Hence it is critical that researchers always find out the reasons for missing data. “Despite the importance of missing patient information on study conclusions,” Prof Sloan said, “there are currently no set guidelines on how researchers should deal with gaps in their data.” Prof Sloan gave a brief overview of each of the ways that researchers impute gaps in quality of life data such as taking the mathematical average of the completed results. He explained that there is no perfect way, but that a consistent method needs to be applied throughout a study. A research project in which Prof Sloan was involved analysed the impact of different imputation methods for missing cancer patient quality of life data. When quality of life data were missing later in the trial, or if one treatment arm was missing significantly more quality of life information than the others, then it suggested that those patients may have dropped out because of side effects and/or were too sick to complete the questionnaires. Using an example of a published (non-cancer) trial of the drug sucralfate in stomatitis, Prof Sloan explained that the medicine caused marked side effects in some patients, making them twice as likely to drop out of the study. Initially, this trial did not fairly account for these

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

missing data, making it appear that sucralfate actually improved quality of life. The situation of missing data as a whole could be improved if the academic community and all the relevant stakeholders come together to set standards for how missing data ought to be analysed and reported.

Furthermore, if the quality of life results of a trial are fed back to the patients - which happens less than 10% of the time - then many misinterpretations may be revealed. Prof Sloan and Dr Pe said: “We encourage patient advocates to get involved in the clinical trial process, to never be intimidated, and to ask questions. Remember that the advocate is the voice for the patient.”

Day Two Plenary Session 4 The WHO classification of brain and CNS tumours PROFESSOR RAKESH JALALI leads the NeuroOncology Group in Tata Memorial Hospital, Mumbai, India and he runs the Brain Tumour Foundation of India. He was also the driving force behind establishing the Indian Society of Neuro-Oncology (ISNO). Under his leadership two national expert panels on formulating ISNO guidelines for medulloblastoma (2015-2016) and the ‘WHO 2016 classification of CNS tumours and clinical impact’ (2016-2017) were undertaken.

Key points: There are more than 150 types of brain tumours, which are defined according to the World Health Organisation (WHO) Classification of Central Nervous System Tumours. n Patient advocates were a driving force that led to the WHO brain tumour classifications being updated in 2016. n The updated WHO classifications have redefined many brain tumour types and take into account great advances made in our molecular and genetic understanding of brain tumours since the classification was last published in 2007. n Conventional brain tumour diagnosis by histology (microscope appearances) is increasingly being supplanted by genetic/molecular information. n Several brain tumour subtypes, such as astroblastoma, have been deleted from the WHO classification as they do not appear to be a separate entity. n

Classifications that incorporate molecular features allow for better treatment planning. For example, low grade gliomas can now be grouped into three types, which have different prognoses according to the mutation status of the IDH gene and whether the 1p/19q chromosome parts are deleted. n Sometimes genetic analysis of a brain tumour can reveal it to be very different to the type diagnosed by pathology. Similarly, the appearance of a tumour on an MRI scan may not reflect the actual molecular subtype of the brain tumour. Multi-disciplinary team meetings are therefore crucial for diagnosis and treatment planning. n

The World Health Organisation (WHO) periodically publishes ‘Blue Books’ on tumours of the central nervous system, which detail their classification, diagnosis and grading. “WHO Blue Books are a bible for pathologists around the world,” said Prof Jalali. In the four editions that were published from 1979 to 2007, brain tumour types were based solely on the tumour tissue’s appearance under a microscope (the ‘histology’). However, during the last ten years many different molecular markers for brain tumours that have relevance to their clinical behaviour have been identified. “There has been a great need to have an evidence-based approach for incorporating this new understanding of brain tumour classification,” he said. Quoting IBTA Chair Kathy Oliver from the previous day’s talk, Prof Jalali said that the updated 2016 49

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: Prof Rakesh Jalali (Tata Memorial Hospital, Mumbai, India and Brain Tumour Foundation of India)

WHO classification represented patient advocates’ “willingness to try” and change things for the better. Klaske Hofstee, chairperson of the Dutch brain tumour organisation, STOPhersentumoren.nl Foundation and who was present at the 2017 IBTA World Summit, was instrumental in initiating an international consensus meeting of brain tumour medical experts (held in Haarlem, The Netherlands) which was foundational in the development of the 2016 WHO classification update. More than 150 types of brain tumour have been documented. The latest WHO Blue Book is an update to the previous classifications. Some rare brain tumour subtypes that were identified based on their pathology appearances have been deleted. ‘Oligoastrocytic’ tumours, for example, no longer exist as a distinct tumour type. Tumours previously thought to be of this subtype are now considered under one of the previously established groups: astrocytic, diffuse astrocytic or oligodendroglial. Other rationalisations to the classification include: chordoid gliomas of the third ventricle, angiocentric gliomas, and astroblastoma now being grouped as ‘other gliomas’, while glioblastoma with oligodendroglial component has been removed. Prof Jalali described the story of a 47-year-old woman whose first symptom of a brain tumour was 50

Photos by MVF Studios

a grand mal (‘generalised’) epileptic seizure in early 2009. MRI scans revealed a malignant tumour, which was removed surgically in January of that year. It was diagnosed as a glioblastoma by pathologists. Genetic testing subsequently showed that the tumour was of MGMT methylated status (indicating that temozolomide was likely to have survival benefit). The patient received chemotherapy and radiotherapy. She was followed up with regular brain imaging and remained well for the next seven years. Unfortunately, she suffered another seizure in late 2016 and underwent further surgery to remove additional brain tumour growth in December 2016. Pathology of the mass again showed a tumour that appeared to be a glioblastoma, but this time, more advanced molecular analysis gave a different picture. “Among other molecular features, the tumour was positive for an R132H mutation in the IDH1 gene. This showed that her glioblastoma had been an astrocytoma all along,” Prof Jalali said. Based on this discovery, the patient was prescribed further radiotherapy and temozolomide chemotherapy. She is doing well. Of all the molecular markers that have been discovered in brain tumours, mutations in the IDH1

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

gene are probably the most important. The R132H mutation in IDH1 is a crucial marker in low/lower grade gliomas. It is the most common IDH1 mutation in brain tumours and is a ‘hotspot mutation’ where a nucleic acid arginine is replaced by a histidine at codon number 132 (a codon is a threeletter DNA ‘word’). Another genetic change that is strongly suggestive of a better outcome and longer survival is 1p/19q co-deletion. This mutation is the combined loss of the short arm chromosome 1 (termed 1p) and the long arm of chromosome 19 (termed 19q). Prof Jalali showed a survival graph from a major trial (RTOG) based on whether this mutation was present or not. Those with the co-deletion were more than twice as likely to be alive at 12 years compared to those without (approx. 60% vs 20%). “We now know that if 1p/19q co-deletion is present then the tumour is an oligodendroglioma, otherwise it is an astrocytoma – the former almost always having a better prognosis.” Prof Jalali discussed research performed with data from The Cancer Genome Atlas (a major research project begun in 2005 to catalogue genetic mutations responsible for cancer). The research identified that low grade gliomas (astrocytoma and oligodendroglioma – grade II/grade III) could be grouped into three types, based on IDH mutation and 1p/19q co-deletion. Using 757 samples of adult glioma, those who have an un-mutated IDH gene (termed ‘wild-type’) and intact 1p/19q have the worst prognosis. Research was published in 2002 in the Journal of Clinical Oncology involving a large cohort of brain tumour patients in Europe. It showed that astrocytomas characteristically infiltrate into healthy brain tissue but a percentage are indolent whereas a few show aggressive behaviour. There is a need to better understand the optimal way to treat these different types of tumour so that patients aren’t underor over-treated. Classifying brain tumours can be complex, but traditional histology is increasingly being supplanted by genetic mutation/deletion information. Referring to a case study of a 24-year-old woman who presented in July 2014 with epileptic seizures, Prof Jalali demonstrated again how new knowledge of molecular information has a great potential for improving patient treatment and better anticipating

how the condition will progress. The woman was diagnosed with a large rightsided tumour. A right frontal craniotomy with radical resection was performed in August 2014. It was discovered to be a ‘low grade astrocytoma’ according to pathology reports, so she was followed-up with observation alone. However, 18 months later, the tumour had progressed. Further surgery to remove the regrowth uncovered that it was now a ‘high grade astrocytoma’. In this instance, all the initial pathology and brain imaging suggested that it was a slow growing tumour, but the molecular markers subsequently showed that it was actually a tumour that carries a poor prognosis. “Now,” said Prof Jalali, “we never just treat IDH mutation negative tumours with observation alone.” Even though much can be learned from the molecular features of a tumour, brain imaging is still very helpful. Research is ongoing to investigate whether IDH status can be detected on MRI scans. A technology called MR spectroscopy, which can measure some chemical features of tumour tissue, holds promise as a non-invasive method for learning about a brain tumour’s molecular make-up. For the final case study, Prof Jalali described a 34-year-old woman who first presented to doctors after three or four sudden episodes of vomiting. A CT scan of her brain showed a mass that was diagnosed as an arachnoid cyst with intracystic haemorrhage. However, when the ‘cyst’ was resected and pathologically examined it was discovered to be an anaplastic astrocytoma. The tumour’s molecular features included IDH and 1p19q status. This information confirmed a final diagnosis of anaplastic astrocytoma (as per the updated WHO classification). This information then helped guide the patients’ on-going care. Finally, Prof Jalali discussed the role of brain imaging in this new era of molecular-based diagnosis, stating that joint radiology and pathology meetings to discuss individual patients will help lead to improved care. DISCUSSION Prof Jalali was asked whether brain tumours should be continued to be referred to as either ‘malignant’ or ‘benign’, since 5-10% of meningiomas can become aggressive and so such terms may lead to ‘false hope’. 51

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Prof Jalali: “Gliomas are never ‘benign’. But ‘benign’ should be kept as a designation for meningioma. One study has shown that 1-2% of the general population have small, undiagnosed meningiomas which we sometimes informally call ‘incidentalomas’. Glioma can be called ‘low’ or ‘high’ grade, although ‘low grade’ can

again give a false connotation. The current update in classifications is still provisional and is subject to change.” A brain tumour patient in the audience asked “Was my doctor right to say that the IDH status did not matter?” Prof Jalali: “No. IDH status is indeed very important. Testing for IDH mutation should be part of standard care.”

Pediatric neuro-oncology: where are we today with treatment and where should we go tomorrow? PROFESSOR RAKESH Jalali leads the NeuroOncology Group in Tata Memorial Hospital, Mumbai, India and he runs the Brain Tumour Foundation of India. He was also the driving force behind establishing the Indian Society of Neuro-Oncology (ISNO). He has a special interest in paediatric neuro-oncology.

Key points: Medulloblastoma is the most common primary malignant brain tumour in children, and has a survival rate considerably better than adult glioblastoma. n Molecular and genetic advances have shown that medulloblastoma is not one, but four distinct diseases, each with its own prognosis and clinical behaviour. n Therapies are being developed to target these individual subtypes. n Much less is known about rarer childhood brain tumours, such as gliomas and pleomorphic xanthoastrocytoma (PXA), although molecular discoveries – such as the relevance of the BRAF gene in PXA – are opening opportunities for future therapies. n There is a need to focus on survivorship in younger people – which is more than just living longer. n Childhood brain tumours have high rates of longterm medical complications; intellectual decline is an almost universal consequence. n

Photos by MVF Studios

Above: Prof Rakesh Jalali: “Clinical trial researchers always need to realise that survivorship is more than simply surviving…Many trials still focus only on medical outcomes and tumour destruction. They neglect what matters to young people and their families, namely the probability of employment, personal relationships, financial and social independence, and long-term stability.

Many researchers only focus on medical outcomes but the future needs to be on social endpoints – those things that matter to the individual, such as relationships, employment, and financial prospects. n We have witnessed an evolution in brain tumour care, but there are vast discrepancies across the world. The international brain tumour community must come together to address these. n

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

“This topic is very close to my heart,” said Prof Jalali as he continued into his second talk about paediatric brain tumours. “Brain tumours are the leading cause of death and disability in children and I want to tell you that as advocates and physicians, we need to impress on governments, the public and society at large, that it is quality of survival that is more important than length of life.” Prof Jalali explained that medulloblastoma is the commonest type of brain tumour in children. This type of tumour has a survival rate of 50-100% at two years, and 70-95% at five years. This is considerably better than glioblastoma (25-30% survival at two years, 10% survival at five years) which is the most common primary malignant brain tumour in adults. Compared to adult tumours, there is a lot of variability in paediatric medulloblastoma. There are many complications of medulloblastoma, such as damage to mental faculties and hormonal dysfunction. There is a pressing need for robust risk stratification based on molecular profiling and clinical data so that treatment can be optimised for the individual child. Medulloblastoma can be divided into average- and high-risk categories according to various features such as: n the age of the patient n whether there are secondary tumours (metastases) n the appearance of the tumour under the microscope n the tumour’s molecular/genetic subgroup The decision to treat should be based on a balance of risks. In children, the treatments themselves have a high risk of side-effects, which can have lasting impact on quality of life. The last ten years have seen a revolution in medulloblastoma diagnosis and care, thanks to advances in molecular profiling. Medulloblastoma is not one, but four, distinct diseases based on an international consensus. These four groupings are: n Wingless (WNT) n Sonic Hedgehog (SHH) n Group 3 n Group 4 These distinct groupings are of critical importance in the care of the paediatric patient. For example, WNT tumours carry a 95-100% survival, even if they have metastasised (seeded secondary tumours). To

determine these groupings, molecular profiling must be done. This was previously expensive and lengthy, but because technology has developed to become faster and more affordable, techniques such as IHC (immunohistochemistry) make the process simpler and cheaper than ever before. However, researchers are trying to find out whether it is possible to predict what medulloblastoma subgroup a tumour belongs to from an MRI scan thus potentially forgoing the need for surgery or biopsy. Prof Jalali referred to 2016 research, which showed that the size, position and appearance of a medulloblastoma on MRI was accurate for predicting SHH type in 95% of cases, while Group 4 could be predicted with 75% accuracy. Prof Jalali also described recent and ongoing research taking place in the USA and India exploring how to de-escalate WNT medulloblastoma therapy so that children only receive the surgery, radiation and chemotherapy that is absolutely necessary. “Most glioma brain tumours in children are low grade,” said Prof Jalali. “Despite this term, paediatric glioma in certain situations, such as diffuse pontine gliomas, should never be considered benign because survival can be as low as 5-10% in these tumours. Before molecular profiling, paediatric gliomas were a confusing bag of pathologies, presenting with many different appearances on histology and MRI. However, the discovery that the BRAF gene is relevant to childhood glioma has greatly increased our understanding.” Using a case study of an eight-year-old boy diagnosed with a brain tumour after experiencing two months of headaches and ataxia (loss of muscle co-ordination), Prof Jalali illustrated the importance of the BRAF gene. In this instance, the histology report suggested that it was an oligodendroglioma, but the presence of a BRAF fusion showed that it was actually a pilocytic astrocytoma which carries a better prognosis. The BRAF gene may also prove to be important in treatment, Prof Jalali explained. “BRAF inhibitors are a class of drugs that have the potential to treat BRAF mutant tumours.” There are two types of BRAF mutations in brain tumours: 1. BRAF fusion - where two genes have joined together abnormally and which is diagnostic of pilocytic astrocytoma and 2. BRAF V600E mutation - usually found in 53

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

ganglioglioma tumours and the rare pleomorphic xanthoastrocytoma (PXA) Prof Jalali elaborated on PXA tumours, which are grade II gliomas seen in children and young adults, and the impact which the updated WHO classification and knowledge of the BRAF gene have on how the tumours are dealt with. The BRAF V600E mutation occurs in 50-60% of PXA tumours. When the updated WHO classification was applied to patients in the Tata Memorial Centre Hospital in Mumbai, India, several PXA patients had their diagnoses changed from grade II to grade III tumours. Glioblastoma (GBM) in children is relatively rare (less than 5% of paediatric brain tumours) and – importantly – is biologically different to adult glioblastoma. Paediatric GBMs do not have IDH mutations, have a poor prognosis, and there is no accepted standard treatment. Vaccine and immunotherapies are being investigated as potential treatments for this type of childhood brain tumour. Another type of paediatric brain tumour, diffuse intrinsic pontine glioma (DIPG), has a very poor prognosis. Just 5-8% of children with DIPG survive two years. A mutation in the H3K27 gene is seen in 80% of cases. Targeted therapies are being investigated, informed by an increased understanding of this tumour’s molecular and genetic characteristics. Expanding on potential targeted therapies, Prof Jalali explained that manipulating the body’s own natural killer (NK) immune cells to trigger them to attack tumour tissue offers some hope. This approach is the subject of current clinical investigations. Infusions of NK cells have been shown to maintain remissions in children with leukaemia. CAR-T therapy uses a similar principle (with the T-cell class of immune cells) and has received much attention recently thanks to a brief report in the New England Journal of Medicine showing the effects of this treatment in glioblastoma patients. This new type of immunotherapy offers much potential for these hard-to-treat paediatric brain tumours. The second part of Prof Jalali’s presentation focussed on survivorship. “It is the quality of a person’s life that is of principle importance, rather than its length alone,” he said. He showed a photo of a medulloblastoma survivor giving an address from a podium at the Asian Society for Neuro Oncology (ASNO) Annual Meeting 2013. This 54

confident young man was a living example of someone who was leading a normal/near-normal life after a high-risk medulloblastoma diagnosis which had even metastasised to his spine. He received a novel protocol of cranio-spinal radiation therapy (CSI) with carboplatin chemotherapy, and went on to complete his education and qualifications in business administration. Childhood brain and spinal tumour survivors have a higher rate and severity of long- term medical consequences than those with leukaemia and most other cancers. The Childhood Cancer Survivor Study, which included over 10,000 individuals, revealed that 63% of childhood brain tumour survivors have at least one long-term medical condition, and 27% have an ongoing medical condition that is severe or life threatening. Neuroendocrine (hormonal) dysfunction is a problem for many paediatric patients. This is a particular issue in the developing world, where replacement hormone therapy (e.g. growth hormone) is often not available. Nearly all childhood brain tumour patients have some worsening of intellectual abilities, which is typically related to radiation therapy. This is most marked in the youngest patients, children from a low socio-economic background and those who have a supratentorial tumour (i.e. in the upper regions of the brain). Strokes are also a common side effect of paediatric brain tumours and this risk increases with radiotherapy to the brain. Research, however, now shows that newer radiation therapy technologies (such as conformal/3D therapy) reduce radiation exposure to healthy brain tissue and have better outcomes. Prof Jalali highlighted the unique challenges faced by adolescents and young people with brain tumours. n Body image may be negatively affected. n Fatigue can lead to reduced participation in sport/physical activities. n There can be growth disturbances and hair loss. n Weight gain can result. n Fertility can be impaired n Sexuality can be affected due to a dis-satisfaction with the ‘ideal self’ and the perception of being rejected. Has the evolution in brain tumour therapy improved survivorship? Prof Jalali presented data showing that since the 1970s there has been a marked shift from radiotherapy that irradiates the whole brain toward

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

more targeted radiation therapies, such as proton therapy. Research shows that one benefit from this change is that childhood patients treated with proton therapy are significantly less likely to experience secondary tumours (5.4% vs 8.6%). “Clinical trial researchers always need to realise that survivorship is more than simply surviving,” said Prof Jalali. “Imagine asking a parent what they consider most important for their child. What would they say? Many trials still focus only on medical outcomes and tumour destruction. They neglect what matters to young people and their families, namely the probability of employment, personal relationships, financial and social independence, and long-term stability. We should focus on these types of social endpoints.” Prof Jalali stressed that there are vast discrepancies in resources and survivorship between the developed and developing world. In brain tumour care, 95% of

the world’s resources are in the developed world. Hence the cure rate of childhood brain tumours is less than 30% in the developing nations compared to over 70% in the developed world. There are some sobering statistics: n In Japan there is one neurosurgeon for every 50,000 people while in Bangladesh there is just one neurosurgeon per 3.6 million people. n Eighty-five per cent of the world’s population is in developing nations and, with eight million new cancer patients per year in these countries, there is a current shortage of 5,000 radiotherapy units. Presently there are just 4,400 in the developing world. Prof Jalali is working with The Brain Tumour Foundation of India (which he established) to improve access to modern brain tumour care in his country. “We all have a role to play. We must come together globally to ensure that every child has the best possible therapy.”

Masterclass C Sustainable brain tumour care: reducing inefficiencies and waste in our health care systems (All.Can pilot module) DR SUZANNE WAIT is Managing Director of The Health Policy Partner (HPP), which specializes in innovative policy initiatives and evidence-based communications for organisations across the health spectrum. SHANNON BOLDON is a senior researcher at The Health Policy Partnership, working mainly on policy projects in oncology, including the All.Can initiative.

Key points: All.Can is an international multi-stakeholder solutionfocused initiative seeking to improve efficiency and sustainability of cancer care. n Input from patients and patient advocates is vital for accurately identifying areas of health care waste and inefficiency so that the focus remains firmly on what matters most to patients. n

Discussions at the masterclass revealed a wide spectrum of inefficiencies and waste in brain tumour care, which varied between geographical regions. n Issues and potential solutions at all stages of the brain tumour journey were identified, from diagnosis to treatment, follow-up and end-of-life care. n Findings from the masterclass will be used to inform All.Can’s ongoing work and recommendations n A report of the All.Can patient survey is due to be published in spring 2018. (The All.Can patient survey can be found online here: http://www.all-can.org/ n Implementing better efficiency in health care will lead to improved patient care and outcomes. n

Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: Dr Suzanne Wait from the Health Policy Partnership (HPP) co-chaired the IBTA masterclass session on the All.Can initiative with her HPP colleague, Shannon Boldon

IBTA Summit Masterclass C explored ways to reduce waste and inefficiency in brain tumour care. “All.Can is a multi-stakeholder initiative set up to engage policymakers on the need to improve the efficiency of cancer care, focusing on better outcomes for patients,” Suzanne Wait said. “The focus is to improve care via improving efficiency. Although all types of cancer are within the All.Can initiative’s remit, the focus for today’s masterclass session is on brain tumours exclusively.” The vision of All.Can, she explained, is “a world in which patients are at the heart of sustainable cancer care”. The aim of the initiative is to focus on the patient’s journey and perspective and discover how to achieve the best outcomes with the resources available. “The objective is not to spend more or less, but to spend better. Access to novel treatments and improving efficiency should be seen as part of the same continuum.” There are ample opportunities to make improvements. Mounting evidence shows that waste currently accounts for 20% of all healthcare spending. Suzanne quoted the words of IBTA Chair Kathy Oliver, who said: “As a patient, it is extremely frustrating and desperately worrying to be told that there is not enough money to fund the cancer care and support you need when there is so much obvious waste within the health care system.” All.Can has members from across the globe including experts in the field of oncology, health economics, patient organisations, policy-makers and politicians, and industry partners. 56

Photos by MVF Studios

Above: Suzanne Wait: “All.Can is a multi-stakeholder initiative set up to engage policymakers on the need to improve the efficiency of cancer care, focusing on better outcomes for patients.” Shannon Boldon from the Health Policy Partnership (HPP), who co-chaired the All.Can masterclass session with Suzanne, is seated fourth from the left.

One of All.Can’s major projects is running an international patient survey on waste and inefficiency which will then be mirrored by a health care professional survey. Results are intended to reveal patient-driven definitions of waste and inefficiency, and more clarity on where the greatest efforts are needed to make meaningful changes to patient outcomes. Waste and inefficiency manifest themselves in a variety of ways, such as in: n delays and time wasted n poor communication n a disconnect between patients’ needs and care given n over- or under-use of treatments n fragmentation of care n lack of follow-up All.Can is focused on finding solutions which demonstrate where waste and inefficiency have been successfully reduced. Some examples which were discussed in the masterclass follow. The PROCHE programme. This initiative addresses the situation where, if side-effects of chemotherapy treatment are significant, then treatment needs to be modified or postponed which causes delays and wasted drugs. A simple solution was trialled in the PROCHE programme at the Georges Pompidou Hospital in Paris. A nurse telephones each patient two days before their chemotherapy appointment to ask about their side-effects. This means that treatment plans can be adjusted accordingly before the patients

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: “The aim of the All.Can initiative is to focus on the patient’s journey and perspective and discover how to achieve the best outcomes with the resources available,” said Suzanne Wait

Above: Masterclass participants discussing inefficiencies in brain tumour care in their own countries

arrive for their next chemotherapy dose. The results from such a basic intervention are profound. Treatment delays are reduced by half, more patients are treated each day, fewer drugs are wasted and – importantly – patients report less pain and fatigue. Adventure imaging machines. The second example is similarly low-tech. Around 80% of paediatric patients need sedation for MRI imaging tests, which often means that scans have to be rescheduled if an anaesthesiologist is unavailable or a child is particularly upset and anxious. The solution, first trialled at the University of Pittsburgh Medical Center, USA, was to paint imaging machines with childfriendly adventure themes like a pirate ship, the entrance to a coral reef or a spaceship. The results were positive and showed patient satisfaction scores

Above: All.Can focuses on improving cancer care via improving efficiency. Although all types of cancer are within the All.Can initiative’s remit, the focus for the IBTA Summit masterclass session was on brain tumours exclusively

increase by 90%, fewer children needing sedation, and more paediatric patients scanned each day. “Although these examples are encouraging, many of these practices are grassroots only and we are looking to disseminate best practice,” Suzanne said. “The aim of the IBTA All.Can masterclass is to get a better understanding of patient perceptions on waste and inefficiency in brain tumour care. We also want to see how the work we are doing can best serve brain tumour patients and their families now and in the future.” Summit participants shared their perspective on what waste and inefficiency in brain tumour care in their countries means to them. Some examples are: The Netherlands: it was felt there is a focus on measuring only clinical outcomes rather than what truly matters to a brain tumour patient, such as how a diagnosis affects your social life, family and finances. Singapore: there are long waiting times between a brain tumour MRI scan and seeing a doctor for the results. Italy: the doctor-patient relationship is often unbalanced meaning patients and families are scared to ask the doctor questions, make suggestions or even participate in discussions about their diagnosis and treatment. Ghana: there is a high clinical load in areas where there are too few doctors, and a lack of awareness of other professionals who can help brain tumour patients. Turkey: there is a lack of post-surgery support, information and follow-up care for brain tumour patients. Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: IBTA Summit participants at the All.Can masterclass were able to identify a wide range of inefficiencies in their health care systems which impacted on the brain tumour journey

Seated around tables, participants at the All.Can masterclass were tasked with working in groups for 25 minutes to identify where they have noticed waste or inefficiency in brain tumour care and what might be done to address this. Each table was given a large poster with sections for writing problems and solutions for the different stages of a brain tumour patient’s journey: symptoms, diagnosis, treatment, follow-up, and end-of-life/palliative care. An abundance of insightful observations and suggestions were made by the various table teams. A selection of these are summarised below: Waste and Inefficiency at diagnosis Challenges: n a lack of awareness in both the public and medical communities about brain tumour symptoms, leading to delayed diagnosis/misdiagnosis n long waiting times for specialist care and a reluctance of the primary care physician to order tests/refer to a specialist n poor communication and a lack of informationsharing between different members of the care team and the patient and family. Suggested potential solutions: n education and awareness-raising for the medical community and general public n optimisation of the diagnosis and referral pathway n patient advocates being on hand to help ease communication and discuss options with patients 58

Photos by MVF Studios

Above: Nihat Karaoglu (founder of the Turkish Brain Tumour Patients and Caregivers Association) said that in his country: “There is a lack of post-surgery support, information and follow-up care for brain tumour patients.”

an ‘evidence form’ to ensure patients enter correct medical pathways, i.e. “If you have these symptoms… go here…” n

Waste and inefficiency during treatment and follow-up Challenges: n disorganised care n long waiting times for appointments n cancelled appointments n delays in decision-making n patients being forced to make repeated journeys and travel long distances to specialised treatment facilities n lack of information about clinical trials n patients not understanding treatments and potential side-effects fully and being afraid to ask questions about therapies Suggested potential solutions: n schemes to incentivise/reimburse the most efficient health care practices and systems n communication training for healthcare professionals n a stronger role for patient advocates n appointing a logistics coordinator to minimise unnecessary travel/repeated journeys and/or telemedicine options for specialist treatment centres n pre-written treatment consent forms that include evidence-based likelihood of complications/side-effects Waste and inefficiency during palliative and end-of-life care Challenges: n failure of healthcare professionals to appreciate the

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

impact of a brain tumour on a patient’s quality of life n a lack of support for families of patients, potentially leading to longer-term health issues for caregivers or reluctance to seek medical attention for themselves in the future n delayed referral to palliative care due to a false perception that it is only for ‘end-of-life’ n unnecessary hospitalisations n expensive and complex processes for donating tissue after death Suggested potential solutions n earlier integration of palliative care into the diagnosis/ treatment process n education for health care professionals and patients

about palliative and end-of-life care, and for patient advocacy groups to advise that palliative care should be discussed as early as possible n enhancement of family involvement and development of effective home care systems, including home visits n improved and simpler guidelines for tissue donation The above findings and all of the other discussion points from the All.Can IBTA masterclass will be used to inform All.Can’s ongoing work and recommendations. Findings will be presented later in the year at the ECCO (European CanCer Organisation) Summit in September, 2018 in Vienna, Austria. For more information, visit www.all-can.org or contact secretariat@all-can.org

Masterclass D Rare CNS tumor program: implementation of the Cancer Moonshot Rare Tumor Patient Engagement Network DRS MARK GILBERT and TERRI ARMSTRONG (see previous information in this report on these Summit participants) facilitated a masterclass on the Rare Tumor Patient Engagement Network which they introduced on Day One of the Summit (see “State of the art: systemic treatments”).

Key points: Rare tumours, which include brain and central nervous system tumours, collectively make up 27% of cancers diagnosed and lead to 25% of cancerrelated deaths. n The relative rarity of brain tumours – especially the less common brain tumours – presents particular challenges for effective patient care and research. n The Rare Tumor Patient Engagement Network seeks to improve patient care, make it easier for patients to access clinical trials, and to facilitate research n

into new therapies, through the development of an easily-accessible, collaborative international network. n The National Institutes of Health (NIH) in the USA has resources uniquely suited to deal with brain tumour research. n Adopting more flexible, adaptive clinical trial designs will help overcome the hurdles presented by relatively low patient numbers, while hopefully offering better outcomes for trial subjects. n Recruiting sufficient numbers of patients with rare tumours in order to achieve meaningful research is an ongoing challenge that requires a high level of patient advocacy group involvement.

Rare tumours contribute significantly to the overall burden of cancer. Collectively they make up 27% of cancers diagnosed each year and lead to 25% of cancer-related deaths. All paediatric cancers and primary brain and central nervous system tumours are 59

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: Dr Mark Gilbert (right) and Dr Terri Armstrong (left), both from the Neuro-Oncology Branch at the National Institutes of Health, USA

rare and present significant unmet need for therapy. There are substantial challenges associated with rare cancers. These include the facts that: n Rare tumours often take a long time to diagnose and when identified are often at advanced stages. n There is limited social and advocacy support for people with rare tumours. n Most medical centres have limited experience of rare tumours, forcing patients to search hard for experts who are sometimes located in countries other than the one where the patient lives. n There is often no established standard of care for rare tumours, which further amplifies the uncertainty faced by patients n There is a lack of clinical trials for patients with rare tumours. One of the aims of the Rare Tumor Patient Engagement Network is to directly address these challenges (and others) and make it easier for patients to access research and treatment. This will be achieved by developing an easily accessible, national and international patient engagement network for rare tumour research and patient care. It is not only patients with rare tumours and their families who face challenges. Researchers do as well: n It takes a long time to accrue enough patients with rare tumours for clinical trials to yield robust results with evidence of strong treatment effects. n There is a lack of animal and cell-based ‘models’ for lab-based research into rare tumours. n Fund-raising to support the high cost of research into rare tumours is a challenge because rare tumours do not attract the public attention that high profile 60

cancers (such as breast cancer and leukaemia) do. The Rare Tumor Patient Engagement Network will deal with some of these obstacles by forming a collaborative, well-funded research network for rare tumours that will promote development of new therapies and better standards of patient care. Dr Mark Gilbert and Dr Terri Armstrong are based at the National Institutes of Health (NIH) in Bethesda, Maryland, USA. The NIH’s resources are uniquely suited to deal with brain tumours and other rare tumour research. The NIH will offer clinical trial and treatment resources such as travel costs, investigative support, clinical and laboratory data management support and the use of NIH social media networks. The project will employ the CERN Foundation model. CERN (Collaborative Ependymoma Research Network) is a highly successful endeavour focussing on the clinical outcomes that matter most to patients. Dr Gilbert highlighted some of the projects at CERN to demonstrate how it focuses on integrating basic research into clinical testing. CERN has also worked closely with patients and patient advocacy groups. CERN’s first research project had dramatic results. It tested a drug called lapatinib alongside temozolomide chemotherapy. This used an adaptive approach that gave all patients the active treatment. Progressionfree survival in the study was 44%. But perhaps most importantly, patients had major symptom improvement even when changes on MRI scans were small. “We learned not to just look at imaging results,” said Dr Gilbert. A second project, led by Dr Armstrong, collected ependymoma tumour samples and clinical data from nearly 700 patients. These samples contributed to analyses that led to the present understanding that ependymoma exists as seven distinct subtypes. A third CERN project used large libraries of drugs and bioactive chemicals already in existence such the collection held by the US Food and Drug Administration. These were systematically screened for any potential effect they may have on ependymoma. Researchers developed mouse models and molecular methods for high-speed screening and these new techniques will be an important tool for future research. Dr Terri Armstrong then explained another CERN project: ‘The Ependymoma Outcomes Project’. This focused on discovering what the ependymoma patient experience was.

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

“Recruiting patients for this research was a major challenge,” she said, “There were less than 100 patients with whom we had direct contact. We launched a successful online survey and luckily reached enough people. What we found was very troubling. Our research showed that ependymoma has a significantly high impact on quality of life. Patients were very symptomatic, despite being told they had a low-grade tumour. They were suffering substantial pain and patients with spinal tumours were often taking narcotics for relief. Patients also said that they had fragmented care and the majority were not cared for at specialist centres. These findings led to two published papers, one of which solely explored the social impact of ependymomas.” Dr Armstrong said that given the great unmet need revealed in this research, the next stage was to reach out to more patients. This was done using a variety of online strategies including social media (Facebook, Twitter and YouTube), a web-based portal which included educational material, publishing patient stories, distributing a quarterly newsletter, and launching Ependymoma Awareness Day and Ependymoma Awareness Month activities. “Social media was effective at communicating with patients and running surveys. Facebook required extra effort, however, because comments needed to be moderated.” Among the ependymoma awareness-raising activities is the annual butterfly release, which runs in partnership with the US National Brain Tumor Society’s annual Head to the Hill event in Washington DC. The butterfly release is broadcast live online and the initiative has rolled out worldwide, with many groups now releasing hundreds of butterflies to honour loved ones with ependymoma, caregivers, and to support ependymoma research. The ependymoma community has also created a series of videos as a resource for patients together with a guide about diagnosis, treatment and other aspects of life with ependymoma. Results of CERN’s surveys are published online and freely available to all. “We couldn’t have learned what we did if we only went to major institutions,” Dr Armstrong said. “We are continuing to expand our repository of tumour tissue and now trying to reach low-income patients, who are under-represented and at highest risk of not receiving adequate care. We’ve been able to expand our epidemiology [health statistics] work and a project started in August 2017 is looking at risk factors associated with ependymoma. Thanks to the facilities

Above: Kathy Oliver (Chair, IBTA): “The Rare Tumor Patient Engagement Network is a fantastic opportunity for the international brain tumour community.”

available to us at the NIH, we have arranged for patients to complete online surveys, after which they will be sent a sampling tube for saliva [for DNA analysis for research purposes] which can then be sent back to us through the mail free-of-charge.” The Rare Tumor Patient Engagement Network will be web-based, with all results published online thus publicly available so as to be of use to future research. Across the USA, 32 medical and cancer centres have signed up to collaborate and the Network is expanding internationally. Partnering in this project with patient advocacy organisations is a priority and there will be yearly meetings for sharing feedback and giving input. DISCUSSION Kathy Oliver (Chair and Co-Director, IBTA): “The Rare Tumor Patient Engagement Network is a fantastic opportunity for the international brain tumour community. To help make it a truly global initiative, the Rare Tumor Patient Engagement Network should collaborate with the European Reference Networks (ERNs). These are virtual, highly specialist networks involving healthcare providers across Europe which aim to tackle rare diseases including rare cancers like brain tumours. There are ten ‘domains’ for rare cancers under the ‘EURACAN’ European Reference Network umbrella. One of these domains is specifically for brain and CNS tumours. A collaboration between the two initiatives - the Rare Tumor Patient Engagement Network and the ERNs - could prevent overlap and duplication while also opening up access to Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: Brenda Archer, left, Brain Tumour Foundation (Cayman Islands) “The Forgotten” and Nicole Willmarth, Chief Science Officer, American Brain Tumor Association (right)

many more rare tumour patients and sharing resources for translating into different languages.” Dr Gilbert: “Yes, we have initiated a conversation with the ERNs and are currently exploring translation services.” Anita Granero (IBTA Senior Advisor and Oscar’s Angels, France): “Formal partnerships could be made between the Network and advocacy organisations. Patient advocates can often approach doctors faster than through a formal communication process.” Drs Gilbert and Armstrong: “ This is an important idea. A draft agreement to form such partnerships has already been written and is currently under legal review. We are developing a badge graphic for affiliated advocacy organisations to show on their websites and materials to indicate that they are partnering with the Network. We are also hiring an advocacy liaison to strengthen links with patient organisations and will be arranging annual meetings and quarterly newsletters, in addition to communicating with patient organisations via social media.” Petra Hoogendoorn (Goings-On, The Netherlands): “Social media is a powerful tool when a message becomes viral. A cancer-based Facebook community went from a handful of people to over a million followers after it received a celebrity endorsement on social media. By partnering with those who already have a powerful social media presence, the Network’s message could be shared much faster and to a greater audience.” Dr Teddy Totimeh (neurosurgeon, Greater Accra Regional Hospital, Ghana): “It would be great to foster collaboration with Africa. There are various locations across the continent that are available for molecular analysis of tissue.” 62

Photos by MVF Studios

Brenda Archer (Brain Tumour Foundation Cayman Islands – The Forgotten): “In the Cayman Islands brain tumours are called an ‘illness’ and not a ‘disease’.” Drs Armstrong and Gilbert: “While we use the term ‘cancer’ we are continually trying to be culturally sensitive and communicate in language that is appropriate to each population. We would like to work alongside other brain tumour advocacy organisations so that we can create resources best suited to what individual patients and their families/caregivers need in their own culture and locality.” The general discussion on the Rare Tumour Patient Engagement Network also highlighted the possibility that some patients may be reluctant to send samples (e.g. saliva) to other countries. Dr Gilbert: “We have gained experience working across international borders with the CERN projects. An agreement is sent to participants and if they prefer, the sample can be returned to them after it has been analysed. We try to make it as collegial as possible. All data is shared with the patient and their doctor. We are very aware of how important that DNA resource is, and so we will only use the minimum amount of a human sample necessary. There is also the option for some patients to travel to the NIH in the USA so that such procedures could be performed in person.” The Network’s biggest challenge may be how to get through to patients around the globe. A lot of energy will have to be put into these efforts, reminding everyone at the IBTA World Summit of the importance of a strong international brain tumour community. Dr Gilbert: “That’s why we are here. We need your help to reach out to patients.” Tumours under consideration by the Rare Tumour Patient Engagement Network are: n ependymoma n medulloblastoma n pineoblastoma n choroid plexus carcinoma n chordoma n gliomatosis cerebri n atypical teratoid rhabdoid tumour (ATRT) n brainstem and midline gliomas n primary and secondary CNS sarcoma n high grade meningioma n oligodendroglioma n pleomorphic xanthoastrocytoma

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Plenary Session 5 Panel Discussion and Q&A: Palliative and supportive care for brain tumour patients: challenges in high and low income countries Chaired by IBTA Senior Advisors Mary Lovely (USA) and Chris Tse (New Zealand), each of the five members of this panel gave a short presentation about brain tumour palliative care in their country. This was followed by a discussion with all Summit participants. FRANCE Anita Granero (Founder & President of Oscar’s Angels, France): “The legislation is good in France for setting standards of palliative care, an area in which I have personally invested much time and effort. The French government established a ground-breaking law in 2005 called ‘Leonetti’s Law’. This authorises doctors to withhold unnecessary medical treatment or to intensify pain relief, even if this hastens death. This was upgraded in 2016. The neighbouring country of Belgium has passed legislation that allows for ‘guided suicide’, which has stimulated a lot of debate in France. “There are 5,040 identified palliative care beds in France. The adult palliative care wards work very well by providing everything you need as a patient and family. However, there are no paediatric palliative care wards. This is an ongoing concern and is partly due to French society’s view of death. Like other countries we are faced with problems of how the population sees death, especially in children. No one likes to think of children dying which is why palliative care wards for children in hospital are seen as socially unacceptable. Children tend to die in intensive care or cancer wards instead. “Laws in France cover the rights that patients have for palliative care treatments and what care they should receive when at home. Every person receiving palliative care must receive follow-up in a local hospital or at home, and the system of home care works well. A very thorough survey conducted in France in 2013 showed that there was room for improvement, however. Findings from the survey concluded that the

Top: IBTA Senior Advisor Mary Lovely from the USA co-facilitated the Summit session on palliative care with Chris Tse, also an IBTA Senior Advisor (from New Zealand) pictured above

law was not applied equally for everyone. It was found that some health care professionals have not received adequate training in palliative care and there is a disparity of palliative care across the county. Funds are not allocated where they should be.” SINGAPORE Melissa Lim (Founder and President, Brain Tumour Society Singapore): Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: Anita Granero (IBTA Senior Advisor and Oscar’s Angels, France) described palliative care services in France

“The name ‘Singapore’ comes from a Malay word meaning ‘Lion City’. We have a population of 4.5 million, one million of whom are foreigners. It is an economically successful country, ranked as the world’s most “pro-business” state, and the seventh least corrupt, as well as the third richest in terms of GDP [Gross Domestic Product]. “One of my most pressing concerns about brain tumour care in Singapore is the lack of an official registry of brain tumour patients. Every year, public hospitals perform approximately 100 neurosurgery operations for adult patients but it is not known how many are for brain tumours. We know that there are around two new paediatric brain tumour diagnoses in Singapore each month. “To receive palliative care, an individual must be given a certificate of terminal illness. The decision to grant a certificate is made by the patient’s doctor and has to be authorised by two other doctors, who are typically specialists. If there is a disagreement between physicians then the case is referred to the country’s Ministry of Health to be scrutinised by another panel of experts. If a decision to grant a terminal illness certificate is refused then the patient must receive standard medical care, rather than palliative care. Any individual can draw up an Advanced Medical Directive, which states how they wish to be treated during end-of-life care. And once a person’s terminal illness certificate is granted, the Advanced Medical Directive is triggered. “Home care is encouraged as the main way to receive palliative care. The Home Care Association (which is the largest organisation in Singapore that 64

Photos by MVF Studios

Above: The palliative care panel at the IBTA Summit, left to right: Teddy Totimeh (Ghana), Melissa Lim (Singapore), Terri Armstrong (USA), Brian Nyatanga (UK - not shown in this photo) and Anita Granero (France)

delivers home palliative care) has five satellite centres, each staffed by a doctor, nurse, medical social worker, and non-medical volunteer. These teams work together to meet the needs of the patient and their family. “Hospice care is available on an inpatient basis, although this is only granted if the person is deemed to have less than three months to live. Patients can also receive palliative day care from one of the country’s care hospices. Day care is heavily subsidised by the government, although after six months’ treatment the patient needs to pay, which can represent a problem for many people.” UNITED STATES Terri Armstrong (Senior Investigator in the NeuroOncology Branch at the National Cancer Institute, USA): “We conducted a survey of healthcare professionals at a Society for Neuro-Oncology (SNO) Annual Meeting. At this meeting, most neuro-oncologists told me that they had referred patients to palliative care and this was usually prompted by a specific symptom. A third of neuro-oncologists felt uncomfortable discussing palliative care, and told me they had received no mentorship on the issue. Almost unanimously, interviewees reported that brain tumour patients were highly symptomatic at the end of their life. Women seemed to be more comfortable talking about palliative care than men. There is a body of research that supports the importance of good palliative care. Studies have examined when it is appropriate to introduce palliative care to cancer patients, and by referring patients

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: Melissa Lim, pictured second from the left, represented brain tumour patients in Singapore

within eight weeks of diagnosis they had an improved quality of life and lived longer. Another approach which appears to lead to a longer and better quality of life is bringing a palliative care professional into the medical oncology team so that they can give the clinicians palliative care training. In the USA, there has been an effort to refer to palliative care as ‘supportive care’, so as to change the emphasis and make the issues easier to talk about with patients. Progress appears to be taking place. Guidelines published in 2017 by the American Society for Clinical Oncology [ASCO] state that advanced cancer patients should have a palliative care plan in place within eight weeks of diagnosis. In reality, it is difficult to find palliative care services especially when it comes to symptoms such as intractable pain and nausea. Which palliative care professional an individual can see depends on the level of health insurance that they have. Often this can be insufficient. Insurance cover will generally only provide a weekly nurse visit, access to medicines at home, and some counselling. Brain tumour patients often need dayto-day care and so this must be purchased privately.” UNITED KINGDOM Dr Brian Nyatanga (Senior Lecturer and Academic Lead for the Centre for Palliative Care FHEA at the University of Worcester, UK): “I feel that palliative care cannot be sustained in a particular building and that the service must follow the patient to wherever they need the care, because individual units will never be able to offer the facilities needed to

Above: Terri Armstrong mentioned that In the USA, there has been an effort to refer to palliative care as ‘supportive care’, so as to change the emphasis and make the issues easier to talk about with patients

cater for every patient. I am now seeing palliative care within intensive care and emergency admissions units – because this is where the patients are. Palliative care must be done in partnership with the patients because people do not follow treatments when they are simply instructed. Moreover, the type of care a patient receives should depend on the quality of life they want, not what doctors/ caregivers think they want. This feeds into dignity and it is important that memories are bearable for the family and friends who are left behind. There are bereavement problems if a patient dies in a bad way. The caregivers and health care professionals should not be forgotten because professionals put in a great emotional investment. We forget that this has an impact and there is a lot of stress and burnout. We are increasingly realising that we need to look after the caregivers, and we need professionals to look after them. Caregivers are often determined to stay alongside the patient, but they may not look after themselves.” GHANA Dr Teddy Totimeh (Neurosurgeon at Greater Accra Regional Hospital, Ghana): “My perspective of palliative care is quite different to those of the other panellists. In Ghana, conventional medicine is relatively new and was only introduced about 90 years ago. Prior to this, all medicine was provided by herbalists, who would usually give some kind of potion. There was no hospital a person could go to and so a person would live or die in the presence of family, and all care would be given by them. Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

“This cultural and historical background means that palliative care is a fairly new speciality in Ghana. In many parts of Africa, palliative care is unheard of. There are around 5,000 doctors in Ghana, and the medical care that they give is grafted onto the existing culture. I was trained in a main teaching hospital where the philosophy was for the patient to return to the family if the medical therapy ends. Progress in the field is being made. Recent years have seen the start of palliative care training for health care professionals, but the service is over-stretched and over-subscribed. As a result, palliative care doctors must still rely on the community. At least now palliative care is an established discipline and a recognised subspecialty. Nurses and doctors are being trained but we will be relying on the community for some time yet.”

Above: Neurosurgeon Teddy Totimeh said that the cultural and historical background means that palliative care is a fairly new speciality in Ghana. In many parts of Africa, palliative care is unheard of

Above: Dr Brian Nyatanga is a senior lecturer and Academic Lead for the Centre for Palliative Care at the University of Worcester, England

Above: Chris Tse, IBTA Senior Advisor, opens the discussion segment of the palliative care session at the IBTA World Summit

DISCUSSION Chris Tse introduced the palliative care discussion. “The WHO has a definition of palliative care,” he said, “but we want to hear your definitions and your ideas about what palliative care means in your country. The WHO definition is: ‘Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. (World Health Organisation)’ Mary Lovely then summarised a few points made by the speakers before inviting Summit participants to share their thoughts about how palliative care

is practised in their own countries and what the international community can learn from this. Karen Risgaard (Danish Brain Tumour Association – HjernetumorForeningen): “In Denmark, when a patient is getting sicker and needs palliative care, a doctor can make a ‘terminal statement’. Thereafter, many services are offered to the patient free-of-charge, including medicine. Most importantly, the relatives have the right to get paid time off work so that they can care for the patient at home. This kind of provision means that the family can have economic stability while caring for a loved one. Among the services available, patients may have access to a priest, psychologist and specialist therapists such as physiotherapist and music therapist, in addition to a doctor and nurse.”

Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: Brian Nyatanga: “The type of care a patient receives should depend on the quality of life they want, not what doctors/caregivers think they want. This feeds into dignity and it is important that memories are bearable for the family and friends who are left behind.”

Anita Granero: “There is controversy, even among physicians, about when to start talking to patients about palliative care. In families there is a misconception that talking about palliative care means the child is going to die. This is not necessarily true and it could be short-term support before going home. Whose responsibility is it to make a palliative care referral? There is a multidisciplinary team and there can be a fight over who is in charge. Patients are then stuck in the middle.” Dr Brian Nyatanga (UK): “In the UK we are trying to make care more consistent. There has been a push for palliative care to be introduced from diagnosis and the UK’s perspective is changing from thinking that hospices are places where you enter alive and come out dead.

Above: Bonita Suckling (founder of Rainbows and Smiles in South Africa) speaking at the IBTA World Summit

Above: Karen Risgaard from the Danish Brain Tumour Association, HjernetumorForeningen

Anita Granero: “Integrating a palliative care-trained advocate into the multi-disciplinary team may be a possible solution.” Barrie Littlefield (Cure Brain Cancer, Australia): “Because palliative care can often mean death in a patient’s eyes and many people won’t go anywhere near that word, I think the word ‘palliative’ should be abolished, rather than trying to re-educate people about what the term means.” Catherine Hindson (Brain Tumour Alliance Australia): “I agree that we need a change in the term used. I believe that within two months of receiving a terminal illness, people should be introduced to palliative care. My husband received palliative care for many years before he died. I suggest the term ‘extended care’ might be a suitable alternative.” Bonita Suckling (Rainbows and Smiles, South Africa): “I agree. I don’t like the term ‘palliative care’ and found it difficult to talk about it when my child had a brain tumour.” Petra Hoogendoorn (Goings-On, The Netherlands): “I hadn’t heard the term ‘palliative care’ until my husband was diagnosed with a brain tumour. It was a real challenge to talk to my children about dying. I heard US doctors use the term ‘wellness centre’ for a palliative care unit to enhance use.” Kathy Oliver (Chair and Co-Director, IBTA): “There needs to be education about palliative care so good communication is vital. Palliative care has an identity crisis as people aren’t really sure what it means. A doctor once told us in relation to our son ‘All we can offer is palliative care.’ Palliative care shouldn’t be presented as a last resort.” Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: Simone Silenzi, founder of Italia-Glioblastoma MultiformeCancro al Cervello, Italy

Terri Armstrong (USA): ‘Most physicians in the survey we conducted felt that they were lacking palliative care training. Palliative care training should be integrated into professional education, even though palliative care is not an easy speciality to learn.” Dr Nyatanga: “There is a UK organisation called ‘Dying Matters Alliance’, which aims to break the taboos surrounding death and aims to help people talk more freely about death and dying.” Petra Hoogendoorn: “From time to time, I teach medical students. One of the assignments I use is the ‘Death over Dinner’ initiative (http://deathoverdinner.org) which invites people to discuss dying. The medical students who attended a ‘death over dinner’ discussion tell me how difficult they found it to invite people and start the discussion and how surprised they were with the answers given by often their close friends.” Dr Totimeh: “I sympathise with anyone who struggles

Above: Megan Vanderbur (an AbbVie representative, USA) 68

Photos by MVF Studios

Above: Klaske Hofstee of the Dutch brain tumour organisation STOPhersentumoren.nl

Above: Lia LeRoy heads up Werkgroep Hersentumoren in Belgian which was established by her late husband Frank Boeye

to talk about issues surrounding palliative care. I have learnt to not talk in euphemisms, but have sometimes agonised about how to discuss it.” Mary Lovely: “Palliative care is about helping people stay well for as long as possible. I call it a ‘partnership’. We need to talk about palliative care when the family is ready to talk about it. We have much to move forward with here.” Simone Silenzi (Italia-Glioblastoma Multiforme-Cancro al Cervello, Italy): “In Italy, a law was passed in 2010 called ‘n. 38/2010 - Provisions for access to palliative care and pain therapy’. This law states that all people have the right not to suffer. There is inconsistency of care across the country, however, and it is difficult for the law to be applied fully and for hospice spaces to be offered in southern Italy. Despite these strong regulations, it has not been established as to who decides when palliative care should start. Sometimes a professor will make the decision, other

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

times it may be a different professional. We should establish someone to co-ordinate these processes. In my personal experience with my mother, the decision to start palliative care was made by the lead nurse - who made that decision against the consensus of doctors and family. There is something wrong here.” Klaske Hofstee (STOPhersentumoren.nl, The Netherlands) “My experiences were different again. Palliative care was brought up on the first day my husband was diagnosed with brain cancer. The prospect that care would not be curative was frightening for me. I had conversations with my mother, who was head nurse, that palliative care is a way to make the patients life as long and as comfortable as possible. In The Netherlands, palliative care can take place at the person’s home. I feel that brain tumour care should require special training otherwise it can be an undignified end. Euthanasia is legal in The Netherlands and can be ‘active’ (i.e.

by injection) or ‘passive’ (i.e. stopping fluids and nutrition, and giving morphine, etc). For the active approach, legislation requires three doctors to agree in order for euthanasia to proceed. For the passive approach, it takes more knowledge to do. Not all doctors are trained in this area.” Lia Le Roy (Werkgroep Hersentumoren, Belgium): “In Belgium a non-profit organisation called ‘LEIF’ helps individuals find doctors for euthanasia. A university also offers a free training course for physicians. There is also an oncology professor who advocates that euthanasia is embraced as an option for cancer patients.” Megan Vanderbur (an AbbVie representative): “Palliative care is not spoken about within many patient organisations. I see that there is tremendous strength in this community, but such strength is untapped in other patient advocacy communities, who have not discussed palliative care. Everyone needs to understand how important this is.”

Plenary Session 6 Let’s talk about… campaigning through petitions and other Parliamentary processes in the UK HUGH ADAMS is Head of Public Relations & Media at the UK-based charity Brain Tumour Research. He has a long background of working with broadcast media.

Above: Hugh Adams from Brain Tumour Research, UK

Hugh started his presentation explaining that while working with Brain Tumour Research (BTR), he identified that having a high profile ambassador in the political sphere would help give the charity’s message greater reach and authority. “We wanted to aim high,” he said, “so in 2004 our Chief Executive Sue Farrington Smith approached MP John Bercow who is now the Speaker of the House of Commons in the UK Parliament, to ask him how we could get the government involved. Sue is a constituent of John’s as well as being someone whose family knows the pain of premature loss. This inspired him to instigate a first debate and to set up an All Party Parliamentary Group (APPG) which he did in 2005. When Brain Tumour Research launched in 2009 we asked John to become a patron of the charity. He agreed and has been a supporter of the cause ever since.” Led by Members of Parliament, APPGs are committees that discuss a particular topic with members of the public. As well as raising awareness of the issues facing Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: Plenary Session 6 co-chairs Twyla Bueno (Executive Director of the Society for Neuro-Oncology Latin America, SNOLA) and Kristen Gillette (Founder and Executive Director of the Kortney Rose Foundation, KRF, USA) introduce the speakers

the UK brain tumour community, the Brain Tumour APPG can help move issues up the political agenda. “I strongly encourage participants to always go to any kind of political gathering well prepared,” said Hugh Adams. “Know what you’re going to say. Take photos. Be well briefed. In my experience, taking statistics and nuggets of information printed on flyers to meetings is extremely effective. For example, our organisation, Brain Tumour Research, prepared materials making the point that brain tumours are the ‘biggest cancer killer of children’. This was a fact based on statistics we researched. The statistic had great impact.” Hugh explained that Brain Tumour Research supported an e-Petition in 2015 which was set up by BTR supporter Maria (Realf) Lester and was based on the charity’s manifesto. It was entitled: ‘Fund more research into brain tumours, the biggest cancer killer of children and adults under the age of 40’. The objective was to put pressure on the UK government to address the issue of the underfunding of brain tumour research. A UK Parliament e-Petition is a public page hosted on the UK government website that contains a statement calling on Parliament to consider a specific action. An e-Petition can be initiated by any six individuals, and 70

Photos by MVF Studios

any UK resident can digitally sign it. If an e-Petition receives 100,000 or more signatures, then it will be considered for a debate in the UK Houses of Parliament. An experienced journalist, Maria (Realf) Lester, whose brother died of a brain tumour, had written an article about her brother, Stephen, who was diagnosed aged 19 while a trainee pilot in the Royal Air Force. Her moving piece about Stephen was published in the popular British newspaper, the Daily Mail. The article had a clear and urgent call to action, which was to sign the e-Petition. This article, combined with a social media campaign, was extremely effective and assisted in ultimately obtaining over 120,000 signatures. The e-Petition led to a debate in the UK Houses of Parliament. Thanks to continued efforts by advocates and a letter-writing campaign, 80 Members of Parliament attended this emotionally-charged debate. The outcome of this debate was the setting up of a Department of Health Working Group and their report into research funding was published in February 2018. “My final point,” said Hugh, “is to be clear about what you want. For example, it isn’t good enough to simply run an awareness-raising event without a call to action. People need to know what they need to do.”

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Let’s talk about… the PBTF Imaginary Friends Society ROBIN BOETTCHER is President and CEO of the Pediatric Brain Tumor Foundation (PBTF) in the United States.

Above: CEO of the Pediatric Brain Tumor Foundation Robin Boettcher described how PBTF has been expanding to meet the needs of its community

Above: Robin Boettcher introduces the World Summit to the PBTF’s latest venture, ‘The Imaginary Friends Society’

The PBTF has expanded the past few years through mergers with three brain tumour non-profit organisations and is now the largest non-profit focused on kids wit paediatric brain tumours. ‘Imagine a world without childhood brain tumours’ is the vision they are fighting for. Their mission is to care for families along their entire brain tumour journey, to find a cure for the deadliest childhood cancer, and to help families and survivors thrive.

“Through these mergers and collaborations with other ‘like organisations’, we’ve expanded programmes and services for families,” said Robin. “For example, we created a new toolkit in partnership with parents and health care providers two years ago. The ‘Starfolio Toolkit’, which is distributed free to parents, is a portable, zip-up binder that contains basic important information about childhood brain tumours, along with resources, paper templates and a practical way to keep track of medications and store letters and reports. Everything we do has an element of partnership and collaboration.” The PBTF’s latest venture is called ‘The Imaginary Friends Society’, a series of free educational videos to help children learn about cancer in an understandable, non-frightening way. The humorous animated characters who narrate the videos were inspired by children’s own drawings of their imaginary friends. Robin showed two ‘Imaginary Friends Society’ videos which had high production values and very effectively delivered their messages. The videos had proved so helpful for parents and had received so many positive reviews that the PBTF decided to expand the project. The PBTF partnered with an advertising agency and have expanded the video library to produce 20 animated short films, covering a wide range of challenging cancer topics, such as ‘what is cancer?’, ‘feeling sad’, ‘losing your hair’, and ‘how to handle shots’. Each new video release is done with promotion and fanfare akin to a Hollywood premiere to engender excitement among children. Another feature of the project that has since been added is that people of all ages are invited to ‘donate’ images of their imaginary friends to be used in future phases of the program. Summit participants were invited to get the word out about this powerful resource. PBTF is currently investigating translating the videos into other languages and all of this work is being done by companies on a pro-bono basis. Their goal is to reach as many families as possible. Visuals, embeddable video and text templates for social media, email and websites are also available for patient advocacy organisations to use. Video files can be sent to those wanting to show the videos in family activity rooms and/or inpatient hospital television networks. These files can also be co-branded with a patient advocacy organisation’s logo. “We are looking to keep the programme alive. We want advocates to share their ideas. Our 2018 plans so far include producing dolls for newly diagnosed children, colouring books, journals and other video experiences.” Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Let’s talk about… brain tumours in the Cayman Islands BRENDA ARCHER is Chairman of the Board and President of the Brain Tumour Foundation (Cayman Islands) – The Forgotten, which she founded in 2014.

Above: Brenda Archer describing the uphill battle she faces in tackling misconceptions about brain tumours, and some of the financial pressures facing those affected by them in the Cayman Islands

Above: Brenda Archer of the Brain Tumour Foundation (Cayman Islands) “The Forgotten” presents IBTA Chair Kathy Oliver with some mementoes from her organisation

Brenda said that the three main challenges people with brain tumours in the Cayman Islands face are: 1. lack of medical personnel and facilities 2. limited knowledge of brain tumours and their effects 3. financial assistance 72

Photos by MVF Studios

With regard to a lack of personnel and facilities, Brenda said it is common for brain tumour patients to be misdiagnosed or diagnosed too late. Brain tumour patients are often sent overseas for treatment, adding to the stress and financial pressures faced by their families. Surgery is available in the Cayman Islands, but not radiotherapy. It is her organisation’s ultimate goal to alleviate this problem. The limited knowledge about brain tumours and their effects is present in the community and the general public. The Cayman Islands has a population of 55,000 and the rate of brain tumours has been high in recent years. There is a continuing stigma and a lack of understanding. From Brenda’s experience, patients and their families do not come forward for educational programmes. To help broaden the public’s appreciation and understanding of brain tumours, her organisation takes part in radio and television shows, and educates on a one-on-one basis. The organisation is in the process of organising their first educational Seminar. Brenda described the uphill battle she faces in tackling misconceptions about brain tumours, and some of the financial pressures facing those affected by them in the Cayman Islands. “The Foundation is very young and with there being so many other charities on the island, it does not get a top spot in the pecking order of donations,” she said. “This makes our commitment to this cause very difficult, as the majority of our funds go directly to the care and assistance of our patients, especially, since 99% of them have no health coverage. We are positively anticipating this to change as the population becomes more aware of our existence and hopefully this will put us on the list of charities that they support. Local and international support is vital if we are to grow and care for those in need. Also, more full sponsorship will alleviate this aspect of our efforts, as we only have two sponsors at present. Overall, the Foundation is working diligently to improve on all of the present challenges. No doubt, my attendance here at the IBTA Summit will be a great enhancement, after publications and some local press coverage.”

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Let’s talk about… challenges in serving a geographicallydispersed brain tumour community in Australia CATHERINE HINDSON is Chair of Brain Tumour Alliance Australia (BTAA). In 2010, Catherine’s daughter was diagnosed with an anaplastic astrocytoma. After a period of misdiagnosis, she was eventually sent from the family home in Canberra to Sydney (a distance of 150 miles/250 km) for surgery. “While my daughter was still in hospital,” Catherine said, “she found Brain Tumour Alliance Australia via internet searches. My search for support also led me to Denis Strangman (co-founder and former Chair of the IBTA). We found help by being proactive, but most people aren’t so lucky. My goal is that every patient is given a brochure of where to find support in Australia. Many tourists regard Australia as a dangerous place

because of its sharks, crocodiles, and venomous snakes. However, such fears are disproportionate because there are only a handful of deaths due to snakebites, shark, and crocodile attacks each year. By comparison 1,200 Australians die from brain tumours annually from a total of 1,600 malignant and 3,000 benign tumour diagnoses.” Catherine offered some perspectives on the vast size of Australia, which presents many issues for effective and efficient brain tumour care. At almost 7.7 million square kilometres in size, Australia is larger than the UK and Europe combined, and is roughly equivalent in size to North America. Displaying a map of the country with the population density highlighted, it was clearly apparent that there were concentrated areas in some coastal regions with many blank areas. The Australian population is very scattered with nearly 20% of the country’s centre being desert. Though a vast landmass, the population is only around 24 million. It is estimated that there are 34 million kangaroos! By way of comparison, Sydney has five million people – a similar population to Barcelona – but

Above: Catherine Hindson, Chair of Brain Tumour Alliance Australia (BTAA) 73

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

is four times larger. Melbourne is the same size as London, but has half the population. The wide population distribution provides significant challenges for provision of services. Australia’s health care system is a web of public and private providers, with each of the country’s six states managing its own health care funding, thus making it potentially problematic for patients travelling between states for treatment. A government-funded Medicare system offers universal healthcare, but gives patients no say in the choice of doctors who treat them. The private health care sector is only partially covered by private health insurance, although private care does give brain tumour patients the choice of surgeon. Seeking the best treatment is expensive. In Australia, if you have no private medical insurance, electing to have private surgery with a top neurosurgeon can cost AUD$85,000 (equivalent to US$65,000), which is slightly more than the average annual salary. Compounding the challenges further, is the problem that brain tumour surgery is only offered in specific locations. An image of the Australian map, with locations of brain surgery units highlighted, showed that the service is scattered, being available in Sydney, Melbourne, Brisbane, Townsville, Perth, Canberra, and Tasmania. Catherine told the Summit: “Keep in mind that Australia is a very large place. Imagine living in Broome, a town on the North West coast, and having a brain tumour. It’s a 2,200 kilometre drive to treatment in Perth, or a four-hour flight, costing around $1,000 - if you get a cheap one.” Even Darwin, the capital city of the Northern Territory, with a population of 140,000, is a 33-hour drive from the nearest hospital that performs brain tumour surgery. Much like her own experience, Catherine said that many brain tumour patients are sent home without any knowledge of support groups, or where to get help. There are presently 16 brain tumour support groups in Australia, but most provide a service only for those living in the near area (and one support group is only for glioblastoma patients). Support services are also not distributed according to where the need is. Australia’s second largest city, Melbourne, is well served, while the largest city, Sydney is less so. 74

Catherine said that Brain Tumour Alliance Australia (BTAA) provides the only national support group. “We have a website where people can request information and we have a 24-hour freecall phone line. We also have faceto-face support groups in Canberra and Sydney, with plans to expand to regional Victoria and Tasmania early in 2018. We are looking to expand their service further, and presently stream meetings from Sydney to another support group in a regional town 200km away.” Catherine summarised the five key challenges BTAA faces in serving a geographically-dispersed brain tumour community: 1. letting patients know what support is available 2. meeting the cost of providing support (no central government funding is received) 3. overcoming distance barriers 4. overcoming technology limitations (internet coverage is poor in some regions) 5. meeting the needs of a multi-cultural society. On this last point, Catherine said that half of all people in Australia were born overseas (a quarter of whom have arrived since 2012), and over 300 languages are spoken. In response to these challenges, BTAA: n sends out information packs by post n provides multi-language resources n funds national and regional patient forums n connects brain tumour fundraising and regional support organisations n supports group leader development n provides regular, national printed and email newsletters and online support pages. BTAA’s priorities for the future, developed in 2016, are as follows: n to support n to inform n to represent n to connect They have appointed a director for each priority. Catherine gave some examples of how they are addressing these priorities. They are investigating translation services for informing people, BTAA is connecting with others via scientific conferences (such as the annual meeting for COGNO - Cooperative Trials Group for Neuro-Oncology); and they are representing the brain tumour community through submitting requests to the government to discuss cancers with a low survival rate.

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Plenary Session 7 The Brain Tumour Patients’ Charter of Rights: next steps This plenary discussion was led by BARRIE LITTLEFIELD, Head of Engagement at Cure Brain Cancer (Australia) and KRISTINA KNIGHT, Director, Research and Program Partnerships at the National Brain Tumor Society (USA).

This session gave all IBTA Summit attendees the opportunity to contribute to what is intended to be a foundational document in brain tumour patient advocacy: The Brain Tumour Patients’ Charter of Rights. Before the discussion began, Barrie and Kristina explained the origins of the document, its purpose, and the ongoing work needed to develop it further. A short Charter was first drawn up in 2006 by the IBTA. The new and expanded draft version is meant to be a living document that is aspirational in intent and continually evolving. The draft, expanded Charter sets out the rights that brain tumour patients, caregivers and their communities should expect. Its content is deliberately ambitious and aspirational in nature, while acknowledging that the Charter might represent a huge jump for many people who don’t live in the developed world. Barrie said: “We have a choice: we can represent the situation as it is or as we want it to be for people with brain tumours. The document should prompt discussion and needs to be approached with an open mind. There may be things here that people do not want to hear or read. These are difficult things to talk about. We want the Charter to lead to discussion as some of these issues haven’t been properly discussed on a wider scale. “Many of us have lost loved ones. There is a huge shock at the time, and all the options look grey and horrible. We wanted to set the ‘gold standard’ of what you should expect – the Charter is aspirational for everyone. “Knowledge is power. When I am in a room with so many people impacted by brain tumours, I pause and am struck by the amount of power that is in this room – and the ability for us to take this back to our countries and make a difference. The HIV community changed practice 20 years ago, purely through activism.

Above: Barrie Littlefield (left) and Kristina Knight (right) co-chaired the IBTA Summit session on The Brain Tumour Patients’ Charter of Rights

Above: “We want the Charter to lead to discussion as some of these issues haven’t been properly discussed on a wider scale,” said Barrie Littlefield.

To be honest with you, this is now our time. The current situation is unacceptable.” Kristina described how the Charter could be applied in different parts of the world: “Where we are located will have a big impact because the economic status and cultural issues within a region are among the many factors that will affect how relevant the Charter will be. Participants ought to run those ‘filters’ when you read the Charter.” Additionally, the Charter drafting group focused on adults on the first pass, but they aim to quickly adapt it to children. Adolescent and the young adult age group may need Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: Kristina Knight, Director of Research and Program Partnerships at the National Brain Tumor Society (USA)

a customised version of the Charter. The word ‘tumour’ has been chosen over the word ‘cancer’, and presently the Charter only deals with primary brain tumours (not metastatic tumours). The Charter needs to be regionalised because there will be higher priorities in certain geographic areas and this is an area that needs further work. All agreed that the Brain Tumour Patients’ Charter of Rights should be owned by the international brain tumour community. The task at hand is to now finalise the draft. DISCUSSION Barrie and Kristina were asked who the Charter was intended for – patients or physicians – and whether it would by a legally-binding code. Kristina: “It is a moral Charter, not a legal document”. Barrie: “The Charter is also intended to be endorsed by advocacy organisations, and we hope all brain tumour advocacy organisations will ultimately endorse it.” Mary Lovely: “I have concerns about the present document’s readability and hope that it can be redrafted into simpler language: Whatever ends up in this next iteration, I think we should have someone 76

Photos by MVF Studios

look at it who understands plain language.” Barrie and Kristina: “We recognise that this will be an issue to address.” Kathy Oliver: “The Charter is deliberately comprehensive. We put absolutely all the issues into this so that it was thorough.” A questioner from the floor asked whether it should be named ‘Charter of Rights and Responsibilities’, given that patients also have responsibilities in their care.

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: Participants in the ‘Charter’ session discuss wording in the various clauses

Kathy: “The introduction to the Charter deliberately states ‘with rights come responsibilities’, so this point is already highlighted.” Gordon Oliver: “Rights are optional, and a patient may choose not to exercise all their rights. Patients are not forced to be involved in every decision. The Charter is flexible enough to be used in that sense. For example, patients have the option to not be forced to know everything about their brain tumour. They should have the right to choose.” Robin Boettcher: “I wonder how the Charter gets to brain tumour patients?” Anita Granero: “Can we then approach hospitals with the Charter to say when patients are not receiving the care that was signed for?” Barrie: “It will be an international effort involving many people and organisations. We will rely on different people in different regions with different jurisdictions.” Anita Granero: “I have concerns over the benefits and the use of this Charter as, in many countries, we already have very detailed charters of patients’ rights that cover the rights of every patient, including brain tumour patients. This Brain Tumour Patients’ Charter of Rights would create confusion and clash with the ones already in use.” Kathy Oliver: “Yes, there are already some existing charters for other conditions. There is some overlap, but we think it would be useful to have a specific charter for brain tumours.” Petra Hoogendoorn: “The Charter should not conflict with laws within a given country where it is used.” Simone Silenzi: “I agree and suggest that I could present it to the European Commission, explaining that a recommendation from them might be a first very important

Above: Mary Lovely suggested that the Charter be drafted in simpler language

Above: Gordon Oliver, Co-Director, IBTA

Above: IBTA Senior Advisor Maureen Daniels (Canada) Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: Rosemary Wormington from Brain Tumour Support in the UK

Above: Robin Boettcher, CEO of the Pediatric Brain Tumor Foundation (USA)

step in it being accepted and acknowledged widely.” Dr Brian Nyatanga: “I wonder about the use of the word ‘hope’ within the Charter. We need to maintain hope, and be supported in that hope by the team, no matter what the diagnosis. How are we interpreting that hope? I am concerned that the Charter could be interpreted as advocating an unrealistic hope. If I were a patient and I may not be alive next year, I may be planning a holiday, yet the reality may not be possible. What is the hope?” Barrie: “We haven’t been prescriptive in defining ‘hope’, as it will be different for each person. There is traction in the medical community about the concept of ‘false hope’. But in my opinion, false hope does not exist. There are ‘false facts’, but not ‘false hope’.” Brian Nyatanga: “I suggest that hope should reflect the reality of the individual and might be best termed ‘reality-based hope’.”

Above: Nicole Willmarth, Chief Science Officer, American Brain Tumor Association (ABTA)

Above: Bec Picone represented the Australian brain tumour organisation Peace of Mind Foundation

Above: Wilson Mugarura from the Uganda Brain Tumour Foundation (left) and Richard Gillette, (right, Kortney Rose Foundation, USA)

Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Break-out groups For the remainder of the Brain Tumour Patients’ Charter of Rights session, Summit participants were assigned to one of ten breakout groups for a 20-minute working session to focus on generating feedback and suggestions, each group working on one or two of the Charter’s 17 sections. This was followed by a 20-minute period for groups to share their conclusions.

Discussions were lively and revealed many ideas and opinions. Feedback varied from simple wording changes to more in-depth alterations. Among the suggestions were: n

changing the emphasis from ‘patient’ to ‘person living with a brain tumour’

using the term ‘realistic hope’ in place of ‘hope’

merging the ‘Investigation’ and ‘Diagnosis’ sections along with various subsections to simplify and avoid repetition n

including the patient’s right to have language translation and/or an interpreter

removing the right to know a ‘median survival’ from the ‘Prognosis’ section, to avoid the doctor being compelled to give a specific number, which may not be available n

greater inclusion of the ‘multi-disciplinary team’ and ‘caregivers’ in various sections

including the statement that there should be ‘no decision about me, without me’

including the right to receive written information about a person’s condition after verbal information

adding diagram(s)/infographic(s) to clarify some of the points

altering some of the wording to the first person e.g. ‘I’ rather than ‘you’.

defining rehabilitation as ‘treatment and supportive care designed to facilitate recovery’ and defining wellbeing as ‘the state of feeling comfortable, healthy, and happy’ n

to include a statement saying that family should have a role in end-of-life care decisions

The breakout groups during the IBTA Summit session on the Brain Tumour Patients’ Charter of Rights enabled participants to take a closer look at the messages in the Charter and to discuss their impact.

Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Summit participants presented on their discussions following the group work during the session on the Brain Tumour Patientsâ&#x20AC;&#x2122; Charter of Rights.

Above: Christine Mungoshi, Zimbabwe (left) and Klaske Hofstee, The Netherlands (right)

Above: (left to right) Gordon Oliver (UK), Maria Solomou (Cyprus), Rosemary Wormington (UK), Christine Mungoshi (Zimbabwe), Kristina Knight (USA)

Above: Kristina Knight (left, USA) and Wendy Fulcher of Brain Tumour Research (UK)

Above: Bec Picone, Peace of Mind Foundation (Australia)

Above: Mary Ellen Maher, IBTA Senior Advisor and Advance Practice Nurse, Northwestern Brain Tumor Institute, Chicago, USA Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Above: Prof Arimantas Tamasauskas, Director, Neuroscience Institute and Chairman of the Department of Neurosurgery, Lithuanian University of Health Sciences

Above: Fiona Keegan, National Coordinator, Brain Tumour Ireland

At the close of the Brain Tumour Patientsâ&#x20AC;&#x2122; Charter of Rights session, Barrie and Kristina confirmed that all feedback would be considered, and the Charter would now progress to the next stage with a view to being finalised. Participants were invited to send further feedback via email and the next version of the Charter would be distributed in due course.

Above: Maureen Daniels, IBTA Senior Advisor and Coordinator of the Gerry and Nancy Pencer Brain Tumour Centre, Princess Margaret Cancer Centre, Toronto, Canada 82

Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

One man’s surprising journey: from brain tumour to biscuit dunking

Above: Dr Stuart Farrimond gave an entertaining and inspiring presentation on how being diagnosed with a brain tumour changed his life in ways both bad and good

DR STUART FARRIMOND is the IBTA’s Digital Technology Advisor (UK). He gave an overview of how his life had changed - in ways both good and bad - since he was diagnosed with a brain tumour. Stuart Farrimond described his life as a hospital doctor, just over ten years ago, in the historic city of Bath in the UK. He had recently married and was working long hours, with a lengthy commute to and from work by bicycle. Dr Farrimond explained that excessive exercise and insufficient rest had led to low energy levels and fatigue. Seeking medical attention from his GP, blood tests revealed that he had extremely low levels of testosterone and thyroid hormone. Because several hormones were out of balance, he was referred for an MRI brain scan to check that the pituitary – a small gland at the base of the brain – was not damaged.

He received his MRI scan during a working day at the hospital and was one of the first people to see the images. The next day, he was rushed in to see a neurologist who confirmed a diagnosis of glioma. Showing slides of his scans to the Summit participants, Dr Farrimond highlighted a large mass in the right, frontal region of his brain. These were dark times, but he chose to make good out of a bad situation and organised a sponsored 100-mile cycle ride with his brother-in-law for the charity Brain Tumour UK (now incorporated into The Brain Tumour Charity). Dr Farrimond’s story was picked up in the local press, radio and the medical press, leading to an outpouring of donations that touched him and restored his faith in humanity. The route was from the city of Bath to the Isle of Wight, off the south coast of England, and about £10,000 was raised for the charity. The ride led him to meet Jenny Baker, then Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Chief Executive of Brain Tumour UK, and Professor Geoff Pilkington, a prominent brain tumour researcher who coincidentally lived on the Isle of Wight. These relationships would later pave the way to Dr Farrimond’s involvement in brain tumour advocacy. He had his first brain tumour operation one month after diagnosis to resect the tumour. The pathology analysis revealed it to be a grade II astrocytoma. He described the harrowing experience of being discharged from hospital 48 hours after surgery, only to suffer an epileptic seizure the following night. This caused profound, ongoing worry for both he and his wife and, despite antiepileptic medication, he continued to have occasional gran mal seizures. Dr Farrimond explained that he tried to return to work but highly-debilitating fatigue, and ongoing seizures meant that he was ultimately forced to leave medical practice on health grounds. To add insult to injury, his wife was diagnosed with multiple sclerosis within a year of his brain tumour being discovered. Dr Farrimond described a second neurosurgery to resect potential regrowth eighteen months after his first operation. Since this time, he has experienced no further full-body epileptic seizures. “I never much liked working in hospital medicine,” he said. Dr Farrimond described life as a junior doctor being like “a little cog in a big machine – you often don’t know whether you are actually helping patients.” Before his diagnosis, he began his training for General

Above: Dr Farrimond draws names out of a hat for the winners of his new book on the science of cooking 84

Photos by MVF Studios

Above: Stuart Farrimond has written a food science book and he has recently made national radio and TV appearances to promote the book which is called ‘The Science of Cooking: Every Question Answered to Give you the Edge’

Practice to become a primary care physician. But being forced to leave medicine meant that he could spend more time with his wife and, ultimately, enjoy his life more. Dr Farrimond then worked as a lecturer in a local college, teaching 16-19 year-olds the scientific components of a health and social care qualification. It was during this time that he discovered a joy for teaching and seeing young adults, who came in thinking that they hated science, leave the course with an excitement for the subject. “It was more satisfying than anything I had ever experienced in medicine.” It was during this time that he started writing a science-themed online blog. Dr Farrimond worked in teaching for three years but increasing work pressure took a toll. When he was awarded a financial grant from the Wellcome Trust for a science-themed digital magazine he had established, he stepped down from teaching to pursue a full-time career as a freelance science writer. Serendipity led Dr Farrimond into mainstream media. A tongue-in-cheek blog article he wrote while working as a teacher called ‘The Science of Biscuit Dunking’ was picked up by a BBC television producer soon after Dr Farrimond left teaching. He was asked to ‘do the science bit’ in a food documentary which featured the well-known UK television cook Nigel Slater. Since that first experience on national British television, Dr Farrimond has been regularly contacted by media outlets. “I somehow fell into a food science

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

niche and broadcasting work gradually built up.” His achievements include writing for national magazines and newspapers, hosting a weekly local radio science slot, conducting food science research and media appearances for private companies. Now a regular guest for the BBC News television channel, he reviews the weekend newspapers. “I would never wish to have a brain tumour, but it has given me opportunities to do things I would never have dreamed of,” said Dr Farrimond. The book publisher DK (Dorling Kindersley) contacted Dr Farrimond last year asking him to write a food science book. It was published just prior to the 2017 IBTA World Summit of Brain Tumour Patient Advocates and he has recently conducted national radio and

television appearances to promote his book. He was delighted that the book was selling well and that it was being enjoyed by so many people. He said: I discovered life after being a doctor.” To conclude his talk, Dr Farrimond showed a video montage of his various television appearances, which caused laughter and smiles among the audience. Earlier in the Summit, he had invited delegates to write their choice of a ‘perfect meal’ on a piece of paper and place their choice in his hat. At the end of the talk he randomly picked out two entries, one of which was that of Tina Mitchell Skinner (founder of Brain Tumour Support, UK) and the other was that of Maria Solomou (Cyprus Brain Tumour Association) who were then each given a signed copy of Dr Farrimond’s book to take home as a memento.

Above: …and the winners are: Maria Solomou (back, Cyprus Brain Tumour Association) and Tina Mitchell Skinner (front, left, Brain Tumour Support, UK) Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Participants at the World Summit of Brain Tumour Patient Advocates were asked:

“What was the most valuable aspect of the Summit? They said:

“The networking!”

“I found every topic very, very helpful.”

“The opportunity to meet other brain tumour advocates from around the world and to hear how everyone is dealing with brain tumour issues in their part of the world.”

“[It was valuable] having time with other brain tumour charities.”

“The perfect mix of scientific contents and patients’ needs. The power of being and moving together. If you want to fast, go alone, if you want to go far you have to go together.”

“Making crucial new collaborations. Learning many important new things related to brain tumours.”

“[I learned about] things I can use in my country to help patients (rare cancers); update on the status of different treatments surgery, radiotherapy, etc”

“Multidisciplinary aspect.”

“The most valuable aspect of the Summit was the richness of topics as well as diversity of representatives of different countries/points of view of patients, patient advocates, health care providers, doctors and industry.”

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

“The range of talks, the opportunities to share what works and the challenges; networking; making new connections and refreshing old ones. Helping less well-resourced countries.”

“Meeting motivated and talented clinicians and patient advocates.”

“Networking and information to take home. Renewed energy and passion”

“Awareness and education of programmes and new efforts by organisations across the globe. As always, networking with those I know but don’t see often and to meet new people.”

“The networking was invaluable! So many great people together was wonderful.”

“Hearing about the new classification of CNS tumours and networking.”

“Networking and reviving friendships/making new connections. Engagement of health professionals especially African contingency.”

“Commonality of challenges, willingness to try and work, great educational talks/sessions.”

“Seeing people who fight for the same cause lifts your spirits!”

“Everything!”

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Participants

Sue Abbott

Will Abbott

Susan Abbott is the Co-Founding Director of the Philippines Brain Tumor Alliance (PBTA) established in 2007. PBTA was founded a year after her husband, William - the Founding Director - was diagnosed with an astrocytoma grade 2 on October 29, 2006. William underwent an awake craniotomy with only 60% taken of the mass due to the sensitivity of the location. It progressed to a glioblastoma (grade 4) in 2010. The surgeon, Dr. Gerardo Legaspi excised almost 99% of the mass. Up to this day, it remains stable and no activity has been shown. PBTA was started as a way of giving back to God for the extension of life given. It was born to help raise awareness of brain tumors and was also a commitment to help the patients and their families cope with the tremendous challenges of the disease when confronted with the financial, physical, mental and emotional burdens. PBTA maintains a Facebook blog site where posts on everything regarding brain tumors, its effects, latest medical interventions, acceptable natural solutions and other relevant information are posted. Professional lecture articles are also posted from John Wayne Cancer Research Institute through Dr. Santosh Kesari, MD, PhD., Chair and Professor, Department of Translational Neurosciences and Neurotherapeutics and Director, Neuro-oncology. There are also neuro-oncology articles by Dr. Marlon Saria, Assistant Professor at John Wayne Cancer Institute, and Nutritional Solutions by Dr. Jeanne M. Wallace plus recipes for the Budwig diet. The Facebook site is viewed by people from many countries already. We receive 30 emails per week and each needs response, follow up and monitoring. PBTA representatives speak at various group efforts to raise awareness and talk about the medical crisis and how to cope with it. We share the same information with medical practitioners to help them improve their care of patients. PBTA writes articles, and does TV and radio interviews. We also do brain tumor walks which raise more awareness. PBTA does hospital and home visits to monitor and give updates on the medical conditions of the patients. Susan also serves as the National Director of AGDM, a nonprofit, non-stock organization committed to empowering the deaf in their communities. She serves as the President of BID, a school for the deaf and hard-of-hearing from kindergarten to college. [Editor’s note: at the last minute, Sue was unfortunately unable to attend the IBTA Summit]

William Abbott was diagnosed with a Grade II gemistocytic astrocytoma brain tumor in October of 2006 following seven years of severe headaches and a focal seizure. On November 14, 2006 he underwent an awake craniotomy with Dr. Gerardo D. Legaspi who was able to excise 60% of the tumor. Unfortunately, the tumor progressed to a glioblastoma four years later at which time William underwent a second awake craniotomy on September 2, 2010 followed by radiotherapy-IMRT and adjuvant Temodal therapy. In 2011, a new tumor was discovered in another location of the brain but it was inoperable so William participated in a clinical trial (Phase II) at Moores Cancer Center with Dr. Santosh Kesari and Marlon Saria in January 2012. Throughout this challenging journey, William and his wife Susan discovered there were a lot of things they needed to know as both a brain tumor patient and caregiver. The couple founded the Philippines Brain Tumor Alliance (PBTA) in 2007, just one year after Will’s first brain surgery as a way of helping others facing a similar diagnosis. The Abbotts provide brain tumor patients and their families with information on the various forms of assistance available, connect them with caring medical practitioners and assist them with access to drugs and laboratory tests. They also offer spiritual guidance and endeavour to empower others to be strong and resilient in their own personal journey. The couple provide counselling, facilitate group meetings and address various groups and organizations regarding lifestyle, health and nutrition choices for not only brain tumor patients but people in general. They also bring patients from other parts of the world to the Philippines for consultation and surgery. A PBTA Facebook page has been created with various posts and links relating to brain tumors. [Editor’s note: at the last minute, Will was unfortunately unable to attend the IBTA Summit]

. . . . . . . . . . . . . . . . . . . . . . . . . . . .

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Hugh Adams

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Hugh Adams is Head of PR & Media at the UK-based charity Brain Tumour Research. With a strong background in national broadcast media, including 12 years at the BBC and freelancing for Channel 4 News amongst others, Hugh Adams has a well-established network of contacts. His communications degree and expertise in digital technology brings creativity and pace to the charity’s rapid development. Having joined Brain Tumour Research at the start of its second year, Hugh was brought in to head up the charity’s core fundraising campaigns and to raise the profile of the charity. Hugh is an experienced commentator regularly representing the charity on national and regional broadcast media, online and in print. He leads the PR strategy, both nationally and regionally, while also driving Brain Tumour Research’s highly successful social media platforms. Hugh has been instrumental in growing the charity and is now a key voice of the brain tumour community, working with dedicated celebrity supporters such as Gillian Anderson, Sarah Beeny and Philip Treacy OBE.

Forgotten’. She is Chairman of the Board and President of the Foundation. The Foundation is registered in the Cayman Islands as a non-profit organisation (NPO). She dedicates her time to advocating for brain tumour education, supporting and assisting brain tumour patients in the Cayman Islands. As an avid reader, Brenda enjoys biographies and mysteries. She is a dedicated sports fan and watches any event she can spare the time for, especially her favourite sport of cricket, a game that captures the spirit of many Caribbean people. Brenda is originally from the capital city George Town, but now lives in Savannah, Grand Cayman.

Terri Armstrong

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Terri Armstrong is a Tenured Senior Investigator in the NeuroOncology Branch (NOB), Center for Cancer Research, National Cancer Institute, National Institutes of Health and Adjunct Professor at the University of Texas Health Science Center and M.D. Anderson Cancer Center in the United States. She has 28 years of experience in the direct clinical care of patients with central nervous system malignancies and has published and presented extensively on clinical care and use of clinical outcomes assessment in this patient population. Her research interests include patient reported outcome development and validation, risk prediction modeling for symptoms and toxicity, and use of outcomes in clinical trials.

Brenda Archer

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Brenda J. Archer hails from the lovely island of Grand Cayman in the Cayman Islands, fondly referred to as “The Islands Time Forgot”. Brenda enjoyed a successful career as an investment banker, and is now retired. Over the years she served on organisations, such as the “Cayman Islands Netball Association” (CINA – Vice President), as a national player and later as a member of the “Cayman Islands Olympic Fundraising Committee” and “Miss Cayman Islands Beauty Pageant Committee”. In 2003, Cayman’s quincentennial year, she served as a member of the “George Town Quincentennial Committee”. She has worked as an agent for the general elections in the Cayman Islands, and as an adviser to some of the candidates. Brenda is a member of the Savannah United Church (Presbyterian). In 2014, Brenda followed a new passion and founded “Brain Tumour Foundation (Cayman Islands)” ‘The

INTERNATIONAL BRAIN TUMOUR ALLIANCE

University of Illinois Brain Tumor Center

Jean Arzbaecher

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Jean Arzbaecher is an advanced practice nurse living in Chicago. She currently works as a clinical nurse specialist in neuro-oncology at the University of Illinois Brain Tumor Center. Jean has spent her entire career (32 years) in neuroscience nursing, and has worked exclusively in brain tumor care for 13 years.

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Jean is active in the neuroscience nursing organization AANN (American Association of Neuroscience Nurses). She has served as the local chapter president, as well as the special focus group facilitator for the neuro-oncology group. She has presented numerous lectures on brain tumor topics both locally and nationally. She has published in peer-reviewed journals, contributed to the AANN core curriculum and written a book chapter for the Oncology Nursing Society. Jean started a brain tumor support group seven years ago and currently facilitates a monthly meeting of survivors and caregivers. The group currently has over 100 members, and usually has between 30 and 50 participants at the monthly meetings. Jean serves as a Senior Volunteer Advisor to the IBTA. She has written articles for the IBTA’s Brain Tumour magazine, and also assists in distributing information about the organization annually at the ASCO (American Society of Clinical Oncology) meeting. She is excited to be participating in this very important world summit.

Irene Azong-Wara

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Jacob’s Hope Foundation in Cameroon, sub-Saharan Africa, is a community-based organisation founded in 2016. We are a health development oriented organisation. We focus on advocating for patients while creating opportunities for them to have better access to health care and information. Our mission is to promote prevention, better health care, socio-economic development, discourage harmful traditional practices and adopt behavioural change communication. We are a small organisation making a difference in a very challenging environment. We are taking baby steps to make a change. Our strategies are advocacy/sensitisation, resource/information centres. Our target audiences are women, children, community-based organisations and policy makers.

INTERNATIONAL BRAIN TUMOUR ALLIANCE

Jenny Baker

. . . . . . . . . . . . . . . . . . . . . . . . . . . . After a life-long career as a senior manager in the UK’s not-for-profit sector, Jenny recently retired after seven years as Chief Executive of Brain Tumour UK, a leading national charity supporting and speaking out for people affected by brain tumours and their families. With a keen interest in public health and patient engagement, Jenny is passionate about quality standards and people receiving the best possible treatment and care. Previously working for the National Trust for England, Wales and Northern Ireland, ultimately as its national lead on volunteering, community and diversity, in 2005 Jenny was awarded an OBE (Order of the British Empire) in recognition of her services to the heritage and environment. Jenny currently assists IBTA as a Senior Volunteer Adviser and is an IBTA representative Trustee of the European Federation of Neurological Associations (EFNA). She is currently an appointed member of the National Committee of Healthwatch England, the statutory body established by the UK government in 2012 to help put people at the centre of health and social care by listening to patients’ views on their care and treatments and ensuring their views are heard by government and those running services. Jenny is also Chair of Healthwatch Bucks, one of 148 independent local Healthwatch organisations across England. Other past and ongoing national and local trusteeships continue to bring insights into the services of voluntary and community organisations and the difference they make to people’s health and wellbeing.

Robin Boettcher

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Robin Boettcher is President and CEO of the Pediatric Brain Tumor Foundation in the United States. With more than 30 years of experience in health nonprofit management and communications, Robin Boettcher is charged with leading the world’s largest nonprofit solely dedicated to children and teens with brain tumors. Since joining the Pediatric Brain Tumor Foundation in 2012, Boettcher has helped transform the organization’s mission

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

programs, grown its annual budget to $7 million and developed a network of thriving chapters in key U.S. markets. These successes have prepared the PBTF to execute an aggressive strategic plan focused on: accelerating investments in pediatric brain tumor research, equipping, educating and empowering families, and fostering meaningful collaboration across the community. Boettcher, a graduate of Harvard Business School’s “Strategic Perspectives in Nonprofit Management” program, previously served as vice president of chapter and community partnerships for the National Parkinson Foundation in Miami. Her accomplishments included establishing a new Chapter Services Department and launching NPF’s first national signature fundraiser, a walk for Parkinson’s disease. She also served as a national field director and executive director for the Leukemia & Lymphoma Society and as president of the National Multiple Sclerosis Society’s Eastern North Carolina Chapter. She brings experience in all areas of nonprofit management, from finance and operations to fundraising and staff and board development. Before beginning her nonprofit career, Boettcher worked in the media and public relations industries, including more than a decade as an Associated Press reporter. A native of Hamilton, Ohio, she holds a journalism degree from Eastern Kentucky University.

Twyla Bueno

. . . . . . . . . . . . . . . . . . . . . . . . . . . . I am the executive director for the Society for Neuro-Oncology Latin America (SNOLA) since its start up in July 2014. I have a degree in pedagogy and have done a post-graduate course on International Affairs (relations). We, as SNOLA, work closely with other societies around the world and are trying to disseminate neuro-oncology throughout our continent as it is not considered a specialty yet. This is one of our long-term goals, to which we closely address all our efforts, especially promoting conferences, and establishing partnerships with events and congresses around the world to aid our doctors in creating a learning community in the field of interest. We have a very wide population in this less developed part of the world we represent. An even longer-term objective of ours is to introduce clinical trials to help our needy patients. There is a lot we are behind in, but we do believe that with effort and little by little, we will get there.

Shannon Boldon

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Shannon Boldon joined The Health Policy Partnership as a researcher in April 2016, and works mainly on policy projects in oncology, including the All.Can initiative. Prior to this, she interned at the World Health Organisation’s headquarters in Geneva on the Ebola Response Laboratory Data team. She has fieldwork experience organising and managing global health and development projects in Ghana and Honduras. In Canada, she supported the development of the home healthcare strategic plan for the Department of Health in New Brunswick. Shannon completed a Master’s in Global Health and Development at University College London. She also holds a BSc in Biochemistry from Acadia University in Canada.

Helen Bulbeck

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Helen is director of brainstrust, a UK brain cancer charity with a national footprint which she founded in 2006. Helen uses the experience of being a patient, relative, member of the public and a carer to support thousands of patients who have brain cancer. She works with cancer-related institutions, professionals and charities, to ensure that she provides the most up to date, relevant and appropriate information. This 360 degree view means that she is well placed to understand the perspectives of patients, carers and health care professionals. Her roles in brainstrust and as a consumer representative with various bodies are as a disseminator of information and the provision of a network and community, so that she can provide advice on achieving effective consumer involvement and creating a voice. Helen’s key drivers are the patients, their carers and healthcare professionals, with whom she interacts daily. Her ethos of ‘none of us is as smart as all of us’ is a core value for her.

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Elemental to Helen’s work is high performance coaching. This sets brainstrust apart. When we are no longer able to change a situation we are challenged to change ourselves. The coaching relationship enables people to face these challenges, so that they learn how to develop resilience and utilise resources to their full potential. Helen stays up to date with relevant research, ensuring her reading is not brain centric. The skills she developed whilst studying for her PhD means that she is tenacious in spirit, but with a listening ear.

INTERNATIONAL BRAIN TUMOUR ALLIANCE

Maureen Daniels

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Maureen Daniels, a registered nurse, has been Coordinator of The Gerry & Nancy Pencer Brain Tumor Centre at Princess Margaret Cancer Centre, University Health Network, in Toronto, Canada for almost 20 years. Prior to that she spent a decade working in neurosurgical intensive care. She has been a facilitator of support groups for patients living with brain tumors and their families for over 20 years. Throughout her career, Maureen has been extensively involved in patient education and program planning. She is a member of the board of Brain Tumour Foundation of Canada and currently chairs their Advocacy Committee. In addition, Maureen is honored to be a Senior Advisor and active participant with the International Brain Tumour Alliance (IBTA). Both of these organizations provide a patient’s voice and perspective on issues of importance for patients and families affected by a brain tumour.

character changes. After the operation she did not show as much of her emotions as she did before. At first it seemed like it was going well and we could go on with our family. We had three daughters: aged four, six and seven. In the beginning of 2002 the impact of the brain tumour was worse and soon things went downhill. Astrid passed away in May 2002, only 16 months after her diagnosis. After the operation we had still a lot of questions remaining. Most of them were about how we should handle our new situation. So in the autumn of 2001 we visited the gatherings of the Dutch Workgroup Brain Tumours Cerebraal (Werkgroep Hersentumoren Cerebraal). Together with my wife, we went to two of their meetings. We got a lot of support from contact with others. After my wife passed away I became a member of the workgroup. Since then I am a co-organizer of five national meetings a year. During these meetings participants are able to ask questions and there is a speaker who comes and talks to us about brain tumours. This takes place in the morning. In the afternoon there are discussion groups for participants where they can exchange their personal experiences. At these kinds of meetings mostly around 35 people are present. We also have a Facebook group and offer contact through phone or email for companions. Every year I also take part in organizing the Public Day Brain Tumours (Publieksdag Hersentumoren). On this day there are around 250 participants and there are 15 speakers. Nowadays, just one of my daughters still lives at home and I have a new partner. I have a managerial position in the logistics sector.

Mariella Delgado

. . . . . . . . . . . . . . . . . . . . . . . . . . . .

John de Bruin

. . . . . . . . . . . . . . . . . . . . . . . . . . . . My name is John de Bruin. Currently I am living in Lexmond in Holland. In January 2001 my wife Astrid, at the age of 35, was diagnosed with a brain tumour. This was after she had an epileptic seizure. Within two weeks, she was operated on and neurosurgeons were able to remove a big part of the tumour. After the operation the headaches and the tinnitus disappeared but instead she had

I am the Chair of the Swedish Brain Tumor Association – West Coast and a Certified Patient Representative at the Regional Cancer Center, West Coast Sweden and a Board Member of the National Swedish Brain Tumor Association. I am also a senior advisor - brand, communications and business development. I have a 30-year history of working in the automotive industry and am skilled in marketing management, business planning, sales, international business, and customer relationship management (CRM). My involvement in brain tumor advocacy started when my only son Johan was diagnosed with a high grade glioma in September 2014. In Sweden, around 1,300 cases of primary brain tumors and 10,000 cases of metastatic brain tumors are diagnosed every year. 17,000 people are currently living with a brain tumor diagnosis in Sweden. Early in 2015 I joined the National Brain Tumor Association in Sweden. Also at the beginning of 2015 I decided to leave my profession to establish in September 2015 the regional Brain Tumor Association in the West Coast of Sweden (Västra Götaland and Halland

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

counties). Together with patients and relatives we seek to advocate and influence health and social care so that the lives of our loved ones will be as good as possible. We work to ensure that the best possible care is available to all patients, no matter where they live in the country. We also contribute to research and fund raising to find a cure, constantly moving forward. In August 2016 I completed the ELF online course for Patient Ambassadors. I have a degree in International Business Administration and Marketing from the University of Gothenburg and I currently combine my voluntary work with my consultant job in brand, communications and operations development.

Vytenis Deltuva

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Vytenis Pranas Deltuva MD. Ph.D, is Professor of Neurosurgery at the Lithuanian University of Health Sciences and Head of the brain surgery department at The Hospital of the Lithuanian University of Health Sciences, Kauno Klinikos. Professor Deltuva is President of the National Society of Neurosurgery; Vice President of the Lithuanian Society of Skull Base Surgeons; Vice President of the Lithuanian Society of Brain Tumor Patients and their Advocates, a Member of the international committee of the International Association of Neuropsychiatry; Chairman of the Center of Rare Neurosurgical Diseases of the Hospital Kauno Klinikos of the Lithuanian University of Health Sciences and a Member of the Editorial board of the Journal of Biological Psychiatry. He is a WHO expert for neurosurgery and invited lecturer at the University of Virginia, Department of Neurosurgery (USA), Winchester Medical Center, Virginia (USA), and the Neurological Institute of Central Georgia, Macon (USA). He is Visiting Neurosurgeon at the Karolinska University Hospital, Department of Neurosurgery (Sweden), Henry Ford Medical Center, Michigan (USA), Harvard University Department of Neurosurgery (USA). He has to his credit 150 scientific publications. Professor Deltuva’s special interests are in neuro-oncology, brain tumor surgery, neurogenetics, skull base surgery and epilepsy surgery.

Jelle de Vries

. . . . . . . . . . . . . . . . . . . . . . . . . . . . In 1994 my partner Alie was, at age 27, diagnosed with a tumor close to the pituitary gland. She was operated on several times, and also had radiotherapy. The consequences of the treatments were severe. She was temporarily partly paralyzed, and in the last few years of her life she was in a kind of a coma-situation. Unfortunately she passed away five years after the diagnosis. Immediately after the diagnosis we became members of the Dutch Brain Tumor Contactgroup hersenletsel.nl. Soon after joining I became a volunteer, and for some years I was one of the two chairmen. At the present time I am a member of the executive board. The Brain Tumor Contactgroup hersenletsel.nl organizes four meetings a year, with about 30 people attending. During the full-day program we offer a qualified speaker in the morning, and in the afternoon we have several discussion groups. We operate a Brain Tumor Contact Group on Facebook with about 550 members, a Brain Tumor Contact Group for surviving relatives with 100 members, a group on Kanker.nl where there are about 350 brain tumor members, and we are available for support by email or telephone. We also take part in the organization of the yearly ‘Public day brain tumors’ (Publieksdag Hersentumoren), with about 15 different qualified speakers where about 200-250 people attend. After Alie passed away I took some time off, and circumnavigated the world with my sailboat. During this trip I met my current Australian partner, and we live together with our two sons in The Netherlands. At the moment I am a project manager, managing IT projects in the machine industry.

Alexandra Diaz Alba

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Alexandra Diaz Alba was born in Guadalajara, México in 1982. She studied at medical school at the Universidad de Guadalajara (UdeG) and graduated as a neurologist at the Universidad Nacional Autónoma de México (UNAM). Motivated by the lack of neuro-oncologists in México she was

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

given a scholarship for a fellowship in clinical neuro-oncology at L´Hôpital de la Pitié Salpètriére in Paris with Professor Jean-Yves Delattre and Professor Khê Hoan-Xuan. In 2015 Alexandra returned to México and has been working with neuro-oncological patients ever since. INTERNATIONAL BRAIN TUMOUR ALLIANCE

Stuart Farrimond

. . . . . . . . . . . . . . . . . . . . . . . . . . . .

Jimmy Doyle

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Jimmy Doyle is currently a member of the boards of two national charities in Ireland, namely Brain Tumour Ireland and HADD Ireland both of which he serves in financial management and governance capacity. He is a founder member of Brain Tumour Ireland. In his professional life Jimmy was a treasury specialist with more than 30 years’ experience in the corporate and banking treasury sectors. He retired in Sept 2014 from his position as a senior consultant in corporate treasury services with PwC in Dublin, having previously served as Director, Treasury in Bank of Scotland (Ireland) Ltd between 1996 and 2010. His experience in corporate treasury management comes from the 15 years preceding his banking career which he spent with Irish Life Assurance plc including 11 years as manager of the Treasury Department. Jimmy is a founder member and former President of the Irish Association of Corporate Treasurers (IACT). In 2008 the IACT bestowed Honorary Life Membership status on him in recognition of his work in the development of the treasury profession in Ireland. He also served as a director of the European Association of Corporate Treasurers 2002 to 2014 and was IACT’s representative to the International Group of Treasury Associations (IGTA) during the same period. In 2011 Jimmy was elected Chairman of IGTA for that year. He also served for many years on the editorial board of TMI magazine.

Dr Stuart Farrimond is the IBTA’s Digital Technology Advisor. He helps coordinate e-newsletter stories, maintains website content, and oversees distribution of the IBTA monthly e-newsletter. Stuart is a medical doctor but following the diagnosis of an astrocytoma in 2008, he was forced to leave the profession. He retrained and worked as a teacher in further education for three years before embarking on a freelance career. Stuart is now a science and health writer, presenter, and educator. He makes regular appearances on TV, on radio, and at public events, and his writing appears in national and international publications, including The Independent, the Daily Mail, and New Scientist. He also specialises in food science research and is author of the book The Science of Cooking: Every Question Answered to Perfect Your Cooking, which was recently published by Dorling Kindersley Books. He writes, edits, and provides web design and technical support for a variety of organisations and he founded an online ‘lifestyle-science’ magazine Guru, which was awarded funding by the Wellcome Trust, the world’s largest medical research charity. Stuart volunteers as a STEM ambassador, offering teaching time to inspire the next generation of young people to be engaged in Science, Technology, Engineering and Maths; and is currently training as an independent advocate to help represent society’s most vulnerable people. Stuart is a keen cyclist and lives in Trowbridge, Wiltshire, United Kingdom, with his wife (and dog). His astrocytoma was treated surgically and he has had clear scans for eight years. And counting

Mario Ferraro

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Mario is the founder and Lead Photographer of MVF Studios, a business that was born out of his lifelong passion for photography. From his childhood years of learning to use manual cameras, and the related skills of developing hard-copy photographs in a darkroom, splicing movies together and adding soundtracks to 8mm films, Mario is now a professional photographer with full-fledged experience in corporate as

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

well as personal assignments. Some of his noteworthy projects include the events organised by the Brain Tumour Society (Singapore), and his photographs of their signature Brainy Car Rally, some of which have been featured in the IBTA’s publications. “The best of life. Captured” is Mario’s simple mission for his work. Ultimately, he wants to bring joy to individuals and pride to companies by capturing the best moments in the people, events and products that matter most. For Mario, “Photography from the heart” is a code of conduct that is reflected in the way he engages with his clients, in the intensity of his images and in his involvement in pro-bono work. Although he is based in Singapore, Mario travels widely and his photographs celebrate the beauty and diversity of the world. He is excited to be part of IBTA’s Third Biennial World Summit, where his mission is to capture the diversity of representation, the intensity of engagement and the cohesiveness of collaboration towards the Summit’s common mission of brain tumour advocacy and support.

currently serves as a third sector member of the CNS Site Specific Clinical Reference Group (SSCRG) for the National Cancer Intelligence Network (NCIN), as well as serving as a lay member on Imperial College NHS Trust’s Tissue Management Committee and the Patient User Group for Charing Cross Hospital’s Neuro-oncology Group. She also plays an active role through both BTRC and Brain Tumour Research in lobbying the British government and national cancer charities for greater and more equitable support for brain tumour research through the Brain Tumour All Party Parliamentary Group, as well as working to raise public awareness of the desperate need for more research funding in the brain tumour field.

Laureline Gatellier

. . . . . . . . . . . . . . . . . . . . . . . . . . . .

Wendy Fulcher

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Wendy Fulcher is a founding Trustee and Chairman of Brain Tumour Research Brain Tumour Research represents the united campaign voice of its 19 member charities, established in 2009 specifically to raise awareness of, and provide substantial funds for brain tumour research, with the ultimate goal of improving patient outcomes and finding a cure for brain cancer. Brain Tumour Research supports the UK’s largest dedicated group of laboratory-based brain tumour scientists and clinicians working across a network of four Centres of Excellence, progressing world-class research and working tirelessly to glean new layers of understanding about brain tumours. Our centres are based at Imperial College London, Plymouth University, Queen Mary University of London, and University of Portsmouth Wendy founded the Brain Tumour Research Campaign, one of the member charities, after her husband John died from a brain tumour in 2001, together with his neurosurgeon, Mr Kevin O’Neill. The BTRC’s purpose is to fund laboratory research at Imperial College’s Hammersmith campus, and clinical research at Charing Cross Hospital, the medical campus for Imperial College London, and one of the Imperial College Healthcare NHS Trust hospitals. In the 11 years since they began the campaign, they have raised over £2 million and established a dedicated Molecular Neuro-oncology Laboratory, as well as funding several fellowships and equipment in both scientific and clinical fields. Wendy was a member of the Brain/CNS Clinical Studies group for NCRI (National Cancer Research Institute) for 5 years and

I am Belgian, living in Japan, happily married to Gentaro Tajima, with a small daughter. I was diagnosed 1.5 years ago with an astrocytoma (grade II). Living with cancer made me gradually more eager to concretely contribute to a better society. I joined the Japan Brain Tumor Alliance and Rare Cancers Japan as a board member this year, and will participate this year in the “Survivor Science Program” organised by the JCA (Japanese Cancer Association). Through this IBTA Summit, I would like to learn more from achievements in other countries to be able to impact Japan. I hope that together we will be able to help each other but also other cancer survivors to use their experiences against the insidious enemy of cancer as a tool to fight for more happiness around the world of cancer patients.

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Mark Gilbert

Kristen Gillette

Dr Mark Gilbert is an expert in the area of clinical research, emphasizing both large, multi-institutional studies for malignant gliomas as well as smaller clinical trials that are designed to advance therapies for less common cancers. He is the former Director of Clinical Research in the Department of Neuro-Oncology and was the Director of the Clinical Research Core for the ongoing Brain Tumor SPORE grant at M. D. Anderson (USA). He recently moved to the National Institutes of Health (NIH) where he serves as the Chief of the Neuro-Oncology Branch. He has led several important clinical trials within the Radiation Therapy Oncology Group (RTOG): the RTOG 0525 study accrued nearly 1200 patients and tested whether a dose-dense schedule of temozolomide is therapeutically superior to standard dosing and the RTOG 0825 evaluating the role of bevacizumab for newly diagnosed glioblastoma which completed accrual in 2011 with 975 patients. Upfront tumor collection and molecular stratification, in addition to the placebo-control design and expansion of the quality of life studies signify advances in clinical trial opportunities in the field. The results of RTOG 0825 were published in the New England Journal of Medicine in 2014. Dr. Gilbert created two multicenter clinical trial efforts: the Brain Tumor Trials Collaborative (BTTC), a 26-center consortium that is geographically distributed in the United States and designed to do creative, mid-range (100 -250 patient) clinical trials, and the Collaborative Ependymoma Research Network (CERN) performing basic and clinical research efforts on this uncommon adult cancer. Five projects ranging from clinical trials, tumor molecular profiling – patient outcomes study, drug discovery by both screening and novel drug synthesis, tumor model creation, exploration of ependymoma stem cells and patient outcomes studies are all ongoing. More recently, Dr. Gilbert, partnering with Dr. Terri Armstrong, was awarded a Cancer Moonshot grant to establish an international rare CNS cancer patient engagement network.

Kristen Gillette is Founder and Executive Director of The Kortney Rose Foundation (KRF) established in Oceanport, New Jersey after the loss of their nine-year-old daughter to a brain tumor in 2006. Over the past seven years Kristen had worked full time as an office coordinator at Monmouth University while also running the Foundation. She recently left that position to become the full time Executive Director of the KRF. The Foundation originated to create Kortney’s legacy of helping other children with brain tumors through the promise of research and has donated well over US $1.5 million in the past 11 years to research. The Kortney Rose Foundation was one of the primary funders of the Children’s Brain Tumor Tissue Consortium (CBTTC), a 15-member institution collaborative effort to share data and research to find answers for pediatric brain tumors. KRF is also the primary funder of a multi-consortium clinical research program focusing on diffuse intrinsic pontine glioma (DIPG) and high grade gliomas (HGG) between the CBTTC and the Pacific Pediatric Neuro-Oncology Consortium (PNOC). Raising awareness is also part of the Foundation’s mission and in 2009 Kristen worked with New Jersey legislators to pass a resolution naming May as Brain Tumor Awareness Month in the State. Kristen was honored with a “Seeds of Hope Award” from NJ Monthly Magazine and The Kathleen M. Doehner Memorial Humanitarian Award from Shore to Help Foundation. In 2016, The KRF was inducted into the Children’s Hospital of Philadelphia’s (CHOP) Chairman Circle which is awarded to donors who have given $1 million dollars or more to CHOP.

. . . . . . . . . . . . . . . . . . . . . . . . . . . .

INTERNATIONAL BRAIN TUMOUR ALLIANCE

Anita Granero

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Anita GRANERO is Italian and lives in France. After a tragic personal experience she founded “Oscar’s Angels”, a charity based in France with projects in Italy and the United States, whose main objective is to provide care and support in the hospital to families of children and teenagers with brain and spinal cord tumors, severe neurological problems and to those in palliative care. Oscar’s Angels established the first French Parents Advocate 96

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Program in Pediatric Neuro-Oncology in the Childrenâ&#x20AC;&#x2122;s Hospital of Toulouse. Their highly trained non-medical volunteers are part of the hospital teams where they represent the families, bring a different perspective to their care, and help health care staff to better understand the emotional stress and needs the families have to face. She holds a DU in Palliative Care.

Catherine Hindson

. . . . . . . . . . . . . . . . . . . . . . . . . . . .

Hariz Hassan

. . . . . . . . . . . . . . . . . . . . . . . . . . . . I am a radiation oncology resident in Prague. Originally from Malaysia, I have been living in the Czech Republic for more than eleven years now. Brain tumours have affected me personally when my sister died of it at a very early age. I never got to know her but her stories and struggle live on, shadowed by my mother. I started my medical career in neurosurgery until I felt like I was not doing enough. Oncology brings me closer to my patients but I still see the need for support beyond what medical professionals can offer. That is why I plan to set up the first brain tumour support group in the Czech Republic.

Catherine Hindson BN is a retired Registered Nurse. Prior to her retirement she spent her career working in operating theatres. During the last 20 years she managed a multi-campus operating theatre complex. She joined the committee of Brain Tumour Alliance Australia after her daughter was diagnosed with an anaplastic astrocytoma in 2010. Within BTAA Catherine has held several roles as treasurer, vice-chairperson and was elected chairperson in September 2016. Catherineâ&#x20AC;&#x2122;s passion is to make sure every person diagnosed with a brain tumour is able to access information and support

Klaske Hofstee

. . . . . . . . . . . . . . . . . . . . . . . . . . . .

Chas Haynes

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Charles (Chas) Haynes, JD has over 20 years of experience in the leadership and operational management of non-profit medical associations, foundations and professional societies. Throughout his career, his primary focus has been in the areas of neuro-oncology and acquired neuro-trauma. He has worked with or served on the board of a number of professional organizations including the Collaborative Ependymoma Research Network Foundation, the International Brain Injury Association, the North American Brain Injury Society and the National Spinal Cord Injury Association. Chas currently serves as the Executive Director of the Society for Neuro-Oncology, a position he has held since 2006. Chas earned a law degree from the South Texas College of Law, USA, in 1999.

Klaske Hofstee studied health sciences and started working, but when she became a mother she stopped to take care of her two girls. In 2007, her life completely changed when her husband, then 38 years old, was sent home with the diagnosis of a malignant brain tumor with no treatment. She founded STOPbraintumor.org to enable more research into brain tumors. With the shattering diagnosis began a ten-year involvement in brain tumor care and quality efforts as she struggled with poor communication, misdiagnosis, and lack of treatment. As well as stimulating more research, Klaske works to inform, engage and empower patients, their family members and caregivers. She is a well known brain tumor advocate in The Netherlands and works together with the big university hospitals such as VUMC Cancer Centre Amsterdam, Erasmus MC Rotterdam, UMC Utrecht, Radboud MC Nijmegen and MUMC Maastricht. Klaske feels a strong moral imperative to share her hard-won knowledge to help others experience brain tumor medical care that is truly patient-centered and gives hope for a cure. Her husband is still alive, but the brain tumor caused him to have cognitive deterioration, making Klaske his caregiver. In 2017 she received a Dutch Royal Medal for her contributions to improve international brain tumor research.

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Petra Hoogendoorn

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Petra Hoogendoorn is an industrial engineer and change manager from The Netherlands. On Christmas Eve 2009 her husband Richard - father of their three children: Chris (then eight years), Simone (then six years) and Thijs (then two years) - was diagnosed with a bi-frontal brain tumor. Richard died, age 40 years old, in February 2012. In his loving memory Petra has since devoted her career to personalizing health care, making an app that helps doctors in getting to the point, patients in getting the right treatment and the right care at the right time and family members avoiding burnout. Goings-On enables patients and family members to monitor within a minute a day their functioning in what matters most to them and what matters most to their doctors. Following initial usability testing with patients and low health literates the prototype is about to be tested for two months with patients, nurse specialists and family members at The Netherlands Cancer Institute. The app has won the Achmea Open Health Community Award (theme: empowering cancer patients) and was selected for the first EU eHealth Hub Lean Startup Academy. Petra regularly gives presentations and lectures and wrote a chapter in a book for doctors on the effects for children of having a parent with cancer.

Rakesh Jalali

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Dr Rakesh Jalali leads the Neuro-Oncology Group in Tata Memorial Hospital, the premier unit in India drawing patient referrals, training opportunities, observers and research project requests and funding. His research interests have focused on the evaluation of highprecision techniques of radiotherapy, late-term toxicities and quality of life, biological imaging, molecular prediction and evaluation of new agents in neuro-oncology. He has more than 200 publications to his credit. Dr Jalali was the force behind establishing the Indian Society of Neuro-Oncology (ISNO) in 2008, serving as its founding general secretary. He recently completed his tenure as ISNO’s President, and has been largely instrumental in putting ISNO on the international

map. Under his leadership, two national expert panels on formulating ISNO guidelines for medulloblastomas (2015-16) and the ‘WHO 2016 classification of CNS tumours and clinical impact’ (2016-17) have been undertaken. Dr Jalali’s honours include awards in Pediatric Clinical Research and Quality of Life Research at the SNO (Society for Neuro-Oncology) meetings and he has delivered countless lectures at various scientific and social forums. He is currently the Asian Society of Neuro-Oncology’s (ASNO) co-editor of Neuro-Oncology Practice and webmaster of ASNO’s website. Dr Jalali also runs the Brain Tumour Foundation of India, a charity dedicated to the welfare of patients with brain tumours and their families. He also conceptualised and helped make an animation film for children with cancer, ‘Bust That Noma’, to alleviate anxieties suffered by children undergoing cancer treatment.

Nihat Karaoglu

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Nihat founded the Turkish Brain Tumour Patients and Caregivers’ Association in 2009 after his sister was diagnosed with a rare and inoperable form of brain tumour called gliomatosis cerebri. The organization currently consists of more than 1,000 members across the country. Nihat holds a degree in Computer Science and Bioinformatics from Vrije Universiteit Brussel in Belgium where he also conducted scientific research in the field of detecting genetic markers in DNA including cancers. He currently works as a technology consultant in the development of medical diagnostic devices such as blood and DNA analysis. Nihat is also the editor of the Turkish language magazine beyintumoru.org. With a monthly readership of 30,000, the magazine educates and informs patients on developments in brain tumour treatments. Nihat has lived in several countries in Europe and speaks English, French, German, and Dutch fluently in addition to his native Turkish. He and his wife Merve currently live in Switzerland and dedicate most of their time to helping and improving the lives of brain tumour patients through advocacy, education, peer support and collaboration with patient organizations all around the world.

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

years in branding and business development for small-to-mid-size businesses, working with non-profit, higher education, biotech, and technology clients. Kris has specialized in client services and project management, as well as working in-house to run marketing efforts. She earned a BA in Graphic Design from Rochester Institute of Technology.

Fiona Keegan

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Fiona Keegan was appointed National Coordinator of Brain Tumour Ireland in March 2017. Brain Tumour Ireland was founded in 2012 by a number of family members following the death of their mother and sister Ronnie Fehily, only four months after being diagnosed with a grade 4 glioma. Fiona has a background in psychotherapy and has worked for over 15 years in the voluntary sector, supporting vulnerable people and their families. Fiona’s previous role involved working with a charity in which she developed the support services available for people living with a chronic condition in Ireland. Fiona’s primary role within Brain Tumour Ireland is to build on the work which has already started in providing first class support services for people with a brain tumour and their families and carers. In addition to advocating for better support for brain tumour patients, Brain Tumour Ireland will continue to support research by part-funding the first brain tumour tissue bio-bank in Ireland and one of only a handful in Europe. Fiona is delighted to have the opportunity to attend the IBTA World Summit of Brain Tumour Patient Advocates and to learn about the work of other organisations within the brain tumour community.

Kristina Knight

. . . . . . . . . . . . . . . . . . . . . . . . . . . .

INTERNATIONAL BRAIN TUMOUR ALLIANCE

Carol Kruchko

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Carol Kruchko is the founding president of the Central Brain Tumor Registry of the United States (CBTRUS), a position she continues to hold in this twenty-fifth anniversary year of CBTRUS. Under her leadership CBTRUS has succeeded in including all primary brain tumors in US cancer registration and in publishing the resulting population-based data. Since 2008, the CBTRUS Reports have been published as Supplements to the SNO journal, Neuro-Oncology, where they continue to top the list of most cited manuscripts. Ms. Kruchko has contributed to publications related to cancer registration and descriptive epidemiology of brain tumors. She is a member of the Board of Directors of the Brain Tumor Epidemiology Consortium. She serves on various cancer registry committees and the SNO Guidelines Committee. She currently oversees the CBTRUS Contract with the Centers for Disease Control and Prevention and is responsible for securing and managing grants and contracts for CBTRUS. Ms. Kruchko has received the SEER Esteemed Colleague Award, the Wings of Hope Award from the Midwest Brain Tumor Center and, in 2017 has been honored with the Joel A. Gingras Jr. Award from the American Brain Tumor Association and the Jan Esenwein Public Service Award from the Society for Neuro-Oncology. In 2014, she was recognized as one of Chicago’s Most Contributing Women by the Chicago Tribune. She has organized two consensus conferences on the cancer registration of brain tumors and currently is focused on implementing the 2016 WHO Classification of Central Nervous System in cancer collection standards.

Kristina Knight is a member of the Programs team at the National Brain Tumor Society, serving as the Director of Research and Program Partnerships. She oversees the vital work of Defeat Pediatric Brain Tumors, the NBTS’s pediatric brain tumor research initiative focused on high-grade gliomas; is part of the industry engagement team; orchestrates the annual NBTS Scientific Summit; and supports the organization in outreach and relationship building. Previously she worked overseeing the Marketing Communications department for seven years, where she helped guide the organization through two mergers, being responsible for the overall brand experience, communications, and oversight of community engagement. Prior to working in the brain tumor community, Kris spent many

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

INTERNATIONAL BRAIN TUMOUR ALLIANCE

Sharon Lamb

Normand J Laperriere

Sharon trained as a psychiatric nurse at Kingston Psychiatric Hospital Nursing School in Kingston, Ontario, Canada. She then moved to Montreal, Quebec, worked at the Montreal General Hospital , and later moved to the Montreal Neurological Institute for a six month neuro-nursing post-graduate course. After graduation Sharon moved to New York City and helped two other nurses open a cardiac intensive suite for both adult medical patients and pediatric surgical patients. The following year, she moved with a nurse friend to San Francisco, where she remained and married. Sharon did private duty nursing for a year until she knew where she wanted to work full-time. Her long term neuroscience career started at UCSF Medical Center in the neuro-radiology department. After eight years of doing the nursing for all the neurological studies, Sharon transferred to neurosurgery working for two surgeons who did chronic pain management. She was the stereotaxic nurse for 20 years assisting them in the operating room as patients were awake during their surgeries. Dr. Mitchel Berger (NS) became the Chairman of Neurological Surgery, and asked her to be his nurse, functioning in a Clinical Nurse Specialist (CNS) role for his practice. Her OR work stopped then. A year or so later, Sharon transferred to the Department of Nursing as the CNS for neurosurgery, neurology and orthopedics. Finally, her last position at UCSF was the Nurse Manager for the Multiple Sclerosis Center. They had eleven neurologists, two front office people and an authorization staff for 70-80 new referrals monthly. Sharon resigned after four years and does occasional work for them in retirement. As the stereotaxic head nurse, Sharon became involved with the brain tumor community, as Dr. Philip Gutin was implanting radioactive seeds for recurrence of GBM patients. At that time, there were no support programs for them and their families, so she began a brain tumor support group in San Francisco and a few years later, one in Palo Alto at Stanford. Those continue to this day, thanks to wonderful nurses who help her with co-facilitation. Sharon was one of the original Board Members of Friends of Brain Tumor Research, a support agency of UCSF to help Dr. Charles Wilson raise research dollars for the Brain Tumor Research Center he had established. That became the National Brain Tumor Foundation, and eventually that organization merged with Brain Tumor Society of Boston to be renamed, National Brain Tumor Society. Sharon resigned from the board five years ago. Sharon continues to co-facilitate two Bay Area brain tumour support groups.

Dr. Normand J Laperriere has recently just stepped down from being Head of the clinical programs in Central Nervous System for the previous 18 years and remains Head of Ocular Oncology at Princess Margaret Cancer Centre and Professor, Department of Radiation Oncology, University of Toronto. He earned his medical degree from the University of Toronto in 1978 and completed his training in Radiation Oncology at Princess Margaret in 1984. He is a Fellow of the Royal College of Physicians and Surgeons of Canada and became an Honorary Fellow of the Royal Australian and New Zealand College of Radiology in 2009. Dr. Laperriere is the Co-Director, Tanenbaum Gamma Knife Centre, Toronto Western/Princess Margaret Hospitals, Co-Chair, Neurologic Disease Site Group, Cancer Care Ontario Evidence Based Program, and Associate Director, Gerry and Nancy Pencer Brain Tumour Centre, Princess Margaret Cancer Centre. Dr. Laperriereâ&#x20AC;&#x2122;s efforts over his 33-year career have focused on the development of one of the largest multidisciplinary CNS programs in the world based at Princess Margaret Cancer Centre, the integration of new technologies in innovative ways to improve outcomes in patients with brain and ocular tumours, and clinical trial development and leadership to help establish new standards of care in many different types of brain tumours. He has trained dozens of residents and fellows over the years who now work in many different regions of the world and was instrumental, along with his multidisciplinary colleagues, in developing evidenced based standards of care for both the management of brain tumours and many of the common medical issues associated with brain tumours. A frequently invited speaker, Dr. Laperriere has given over 200 international lectures and has authored/co-authored over 200 publications in the management of CNS/ocular tumours in adults and children.

. . . . . . . . . . . . . . . . . . . . . . . . . . . .

100

. . . . . . . . . . . . . . . . . . . . . . . . . . . .

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Rolf Ledal

Year after year, we organise all sorts of fundraising events : sport encounters, walks, concerts, raffles etc. Our major event so far was the friendly match between two major Breton professional soccer teams: Rennes and Brest which gathered a crowd of 4000 people on October 7th, 2016 at Quimper. We keep close links with our friends of Oligocyte Pays de Loire. On the day of our last walk called Randoligo, we jointly awarded Professor Antoine Carpentier €42,000 (£38,300) resulting from our 2016 fundraising campaign.

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Rolf J. Ledal, former Vice Chairman of the Norwegian Brain Tumour Association (NBTA), is the Secretary General of Hjernesvulstforeningen. Rolf has a bone tumour in the base of the skull, affecting some nerves and parts of the brain. Luckily this is a benign tumour, and he’s able to spend his time working for patient rights and support, among other prominent issues. Before he took the position as Secretary General, Rolf spent the last two years as the Vice Chairman of the NBTA and as a peer. His work background includes 30 years in the Royal Norwegian Navy, with a career within weapon systems as a technician and later as an officer within logistics and administration. His last commission was as a section commander in the Norwegian Defence Logistics Organization, Supplies Division, with the rank of Commander. During his service, he also has spent 12 years as an ombudsman in Befalets Fellesorganisasjon, an organization for officers and non-commissioned officers in the Norwegian armed forces. Rolf is a member of the Norwegian Independent Order of Odd Fellows, and wishes to spend as much time as possible helping other people.

Bernard Leon

. . . . . . . . . . . . . . . . . . . . . . . . . . . . I am a 64-year-old retired teacher. I taught English to French secondary school pupils for 40 years. I was also actively involved in union work. I am married to Joëlle and we had three children - Tangi, Anne-Lise and Lucie - until that terrible blow in 2010 when we lost Anne-Lise at aged 23 to a grade IV glioblastoma. During her brief fivemonth disease, Anne-Lise was given high quality care and attention by Professor Antoine Carpentier, a leading French neuro-oncologist now at University Hospital Saint-Louis in Paris. This led us to support his research efforts towards new treatments against brain tumours. Professor Carpentier introduced us to the first Oligocyte group ever created in France i.e Oligocyte Pays de Loire. We worked together for about two years and in November 2015, we founded our own Oligocyte group to cover the western part of Brittany.

Lia Le Roy

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Lia Le Roy is the President of the Belgian Study Group Brain Tumours (Werkgroep Hersentumoren vzw). She and her husband, Frank Boeye, who had a glioblastoma, founded this patient support and advocacy group in 2005 together with other brain tumour patients and a scientific council. Until March 2012, she was the Secretary of the organization and her husband was the President. After Frank passed away Lia became President. Since 2005, she has been working as a volunteer for the organization. Lia organizes contacts between patients (collective and individual), information sessions about brain tumours and related psycho-social subjects. She also works closely with other brain tumour patient organizations in Belgium. While a brain tumour is not only an oncological disease, but also a neurological, chronic and rare disease, she is a member of organizations which are working in those fields. Since 2011 Lia has been a board member of the “Vlaams Patientenplatform”, an umbrella organization of more than 100 patient groups which deals with patients’ rights and the patients’ voice concerning insurance, work, access to medicine and drugs, etc. She is a member of the patient group of “Kom op tegen kanker” (the former Flemish Cancer League) which reviews clinical trials supported by that organization. Lia is also a board member of the Belgian Brain Council and a member of the Liga NAH (acquired brain injury) and Radiorg (rare diseases). She is active on the Flemish, Belgian and European level (ECPC, EORTC, EBC and EFNA).

101

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

other type of cancer. We have unashamedly ambitious goals - to double survival and halve the harm caused by brain tumours – and to achieve them we have to do things differently from the way they’ve been done before. I’m privileged to lead an exceptionally committed team driven by a real passion to change the lives of families affected by a brain tumour. We’re now a global charity dedicated to tackling brain tumours, with a ‘can-do’ culture, and we won’t stop until we defeat this devastating disease.

Melissa Lim

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Melissa Lim founded the Brain Tumour Society (Singapore) or BTSS in 2014 and currently serves as its President. Melissa lost her mother to brain cancer in May 1998 and became a brain tumour patient herself when she was diagnosed with an acoustic neuroma in October 2003. Her 16-hour brain operation in February 2004 resulted in some physical deficits, most of which she has overcome. Grateful for the friendship and support she had received throughout her journey with a brain tumour, Melissa aspires to bring hope and encouragement to those who are also struggling with brain tumours. ‘Connecting to Befriend, Enable and Empower’ is therefore the mission statement she has set for BTSS. Since its official launch on 5 March 2014, BTSS now has 300 members and a medical advisory board comprising 11 doctors. BTSS has raised funds and awareness through its signature Brainy Car Rally and has established monthly support groups for adult and paediatric patients. In addition, BTSS offers quarterly educational talks and financial assistance to needy beneficiaries. At the moment, Melissa is leading an advocacy project for the establishment of an official brain tumour registry in Singapore.

Barrie Littlefield

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Barrie Littlefield joined Cure Brain Cancer Foundation in Australia in mid-2013 to accelerate development of new treatments for brain cancer and help drive a leap in survival. Barrie started his career in the UK pharmaceutical industry in sales and brand management roles. Following his move to Australia he worked with the (then) largest communication consultancy in the world to grow and develop their healthcare practice in Australia and Asia, working in Sydney, Melbourne, Taipei and Singapore. During this time, he consulted to most of the major pharma/devices companies across numerous therapeutic areas, issues and the occasional global crisis. He also had a good go at a ‘start-up’ and not-so-dismally failed, learning a lot in the process. More recently, Barrie became deeply interested in change communication and the power of stories and is a passionate advocate for people living with and impacted by brain cancer. Barrie cites his key achievement as being a Dad to Eloise who died, aged ten, in 2011 following a second recurrence of her GBM.

Sarah Lindsell

. . . . . . . . . . . . . . . . . . . . . . . . . . . . I believe every one of us should do whatever we can to change the things that really matter, however challenging that may be. That’s why I’ve spent most of my career with charities that tackle tough problems like poverty, social injustice and inequality. After studying for a degree in social policy, I was awarded a Master’s in voluntary sector management from the London School of Economics and went on to take senior roles at organisations including Caritas, The Duke of Edinburgh’s Award and The Challenge. Moving to The Brain Tumour Charity (UK) as CEO in 2011 felt like the next step in trying to make the world a fairer place. We’re working to reverse years of underfunding and neglect of a disease that kills more children and adults under 40 in the UK than any

102

Linda Longwe

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Born on Human Rights Day, December 10, Linda Longwe is passionate about humanity and supporting cancer causes. She is a board member of the Zimbabwe Brain Tumour Asociation (ZBTA), and the Cancer Association of Zimbabwe. Her efforts have seen the growth of ZBTA’s community engagement and tangible patient assistance.

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Linda Longwe, by profession, is a leadership development trainer and corporate reputation management consultant. She is based in Southern Africa and her company, Linda Longwe International P/L is registered in Malawi, Zambia and Zimbabwe. Linda has won entrepreneurial awards, local and international service awards, including being voted Outstanding Rotary President of the Year: 2011; Winner: Rotary Assistant Governor of the Year: 2012 and is a Multiple Paul Harris Award Winner: Rotary International She is a holder of a Business Administration Degree from the University of South Africa, a post graduate Marketing Diploma from the Chartered Institute of Marketing UK, and a Master of Business Administration Degree from Nottingham Trent University. She successfully completed a Doctoral Research Training Programme (PGC) with the University of Stellenbosch; she is a trained counsellor and recently completed The Spirituality and Practice of Prayer course with Arrupe College. Linda Longwe is a Council Member of the Manicaland State University of Applied Sciences and the founder of Ethics in Enterprise Africa. She thrives on challenges and is highly dependable. Linda is passionate about improving the lives of the disenfranchised. [Editor’s note: at the last minute, Linda was unfortunately unable to attend the IBTA Summit]

INTERNATIONAL BRAIN TUMOUR ALLIANCE

Mary Lovely

INTERNATIONAL BRAIN TUMOUR ALLIANCE

Mary Ellen Maher

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Mary Ellen Maher, RN, APN, CNRN is an advanced practice nurse in neurological oncology at the Northwestern Brain Tumor Institute in Chicago, Illinois, USA. She earned her Bachelor of Science degree at Olivet Nazarene University, then her Master of Science with a clinical specialty in medical surgical nursing at Loyola University in Chicago. Currently, Mary Ellen is coordinating the pre- and post-operative care of all of the patients for Dr. James Chandler. This follows the continuum of care from initial presentation to yearly follow-up or end of life. Mary Ellen has been working with neurosurgical patients for over 30 years and is honored to participate in the brain tumor community. She has been facilitating the Northwestern Brain Tumor Support Group for over 25 years. The group, which consists of patients and their caregivers, meets monthly and covers a variety of topics to informal “Lets Talk” sessions. Mary Ellen has lectured locally and nationally on varied brain tumor topics. She has participated in various research studies ranging from quality of life to vaccine trials. In addition, she has been a group facilitator for the special focus group of neurooncology nurses for the American Association of Neuroscience Nurses (AANN). Mary Ellen has worked annually at the IBTA booth at ASCO and The Society for Neuro-Oncology conferences.

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Mary Lovely PhD, RN, CNRN, is a volunteer Senior Advisor for the IBTA and lives in San Francisco, United States. Dr. Lovely earned her PhD at the University of California San Francisco (UCSF) School of Nursing focusing on symptom management and brain tumor patient care. During her Post Doctoral Fellowship she studied the effects of fatigue on brain tumor patients. Mary developed a program of research around long-term effects experienced by patients and families with brain tumors. She has numerous presentations and publications as Assistant Adjunct Professor in the UCSF School of Nursing. Mary has held positions with the American Brain Tumor Association (ABTA) and the National Brain Tumor Society (NBTS). In these roles, she communicated with patients and families about clinical issues, nationally and internationally, and developed conferences for patients and healthcare professionals. Dr. Lovely co-facilitates an active brain tumor support group in San Francisco, and reviews prospective articles for many journals. She is actively involved in the Milton Marks Brain Tumor Family Camp. She consults for patients and families dealing with cognitive issues following cancer. She is a patient support consultant to biotech startup companies. Mary is a Patient Advocate representative on the NCI Brain Tumor Malignancies Committee.

Han Manders

. . . . . . . . . . . . . . . . . . . . . . . . . . . . My name is Han Manders. Currently I am living in Uden, The Netherlands, together with my wife Margit. In December 1995 at the age of 35, I was diagnosed with a brain tumor (acoustic neuroma). In January 1996 I was operated on and after that I had radiation therapy, a total of 30 times. After more than a year I was able to get back to work again as an ambulance driver. In that year and the years after, I had a lot of problems in my family, I was a different person with another personality, and my temper was something I could not control. That was a very bad situation in my family, I was too often angry at my kids and my wife. After six years we decided to divorce. That was very hard for

103

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

me in the first years, I could still work as an ambulance driver but I was not able to keep my family together. For the last eleven years I have had a new girlfriend and we married four years ago. Very soon after my treatments I decided to look for peers and found Cerebraal, Werkgroep Hersentumoren. After the first meeting they asked me if I would tell my story for the next meeting, I did that and stayed in the organisation. After a few years I became Chairman of the brain tumour group of hersenletsel.nl (braininjury.nl). We organise four meetings a year, where we have a presentation from a specialist in brain tumours, with all kinds of subjects about brain tumours. Once a year we organise a barbecue, a relaxing way to have contact with fellow sufferers. We organise these meetings with a group of volunteers. With Jelle de Vries and John de Bruin I am on the Board. We are also involved in the public arena with brain tumours and we have a Facebook group. Nowadays I live alone with my wife. My two sons live on their own as the sons of my wife. I still have a good contact with my ex-wife. Since the 1st of September I am very lucky to be retired at the age of 57.

Vincent Mbayo

Gillian McDonald

. . . . . . . . . . . . . . . . . . . . . . . . . . . . My name is Gillian McDonald and I am presently Chairperson of Brainwaves NI (Northern Ireland). The charity was started up 25 years ago as a 100% non-profit charity supporting patients and their families affected by brain tumours, as well as more recently providing funding for research at CCRCB (Cancer Centre Research Cell Biology) based at City Hospital in Belfast, Northern Ireland. I personally became involved, having been diagnosed with a benign meningioma in December 2014 requiring a seven-hour neurosurgery to totally remove it. The impact this had on me personally and on my close family was initially devastating as we awaited the pathology report, prognosis and recovery. The support from the charity at this terrifying time, offered information, comfort and reassurance. Once I received a positive outcome I felt I wanted to support others â&#x20AC;&#x2DC;in the same boatâ&#x20AC;?. I work as a professional social worker and I knew this was a voluntary role I wanted to offer by liaising with newly-diagnosed brain tumour patients and their families, along with continuing to raise much-needed funds through organising local charity events.

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Vincent Mbayo is an active volunteer with the Zimbabwe Brain Tumour Association (ZBTA). Vincent prides himself for being a volunteer in the role of field officer for the ZBTA which has given him the opportunity to work with the people directly or indirectly affected by brain tumours and says this has been a life transforming experience. Vincent has argued that the greatest threat to our generation is not war, disease and pestilence but it is lack of knowledge, and the greatest needs for our generation are leaders and pioneers of world change. With the Zimbabwe Brain Tumour Association, his main thrust and drive is information dissemination on brain tumours for early detection, which may lead to better prognosis. Not only does he help patients and the community in general to acquire more knowledge about brain tumours, but he is also actively involved in caregiving as well as support for the patients. In his journey as a ZBTA volunteer, Vincent endeavors to give hope by being a strong pillar in times of need so that brain tumour patients and their families may know that they are not alone. His wish is to bring change to the situation of brain tumour patients and their families. [Editorâ&#x20AC;&#x2122;s note: at the last minute, Vincent was unfortunately unable to attend the IBTA Summit]

104

Michael McDonald

. . . . . . . . . . . . . . . . . . . . . . . . . . . . My name is Michael McDonald. I currently assist Brainwaves NI as a committee member on a voluntary basis. I gladly help with this charity and offer my time because I constantly come into regular contact with sufferers who have been sadly inflicted with the devastating news of brain tumours and their horrible consequences to both the individual and their immediate family, myself being one of those when my wife Gillian (Brainwaves NI Chairperson ) fell ill with a meningioma two years previously. If we can all move forward assisting these wonderful charities in some small way then I feel that hopefully a cure will be found in the near future for brain tumours and the profound impact that they have on all sufferers.

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Tina Mitchell Skinner

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Tina Mitchell Skinner is the Founder and CEO of Bristol-based UK charity Brain Tumour Support, an organisation dedicated to providing specialist, tailored support services to anyone affected by any type of brain tumour. Tina graduated in 1987 with a BA in Modern Languages with Information Systems from the University of the West of England. Following two years with international company IATA at their Executive Offices in Geneva, Tina then took up a variety of marketing posts before moving into management training and development within the UK financial services industry. Tina took a career break to raise their son, during which time her husband Paul was diagnosed with a grade IV glioblastoma. Paul died in early 2003, only 18 months after his diagnosis. The charity was set up in his memory. Now, fast approaching its fifteenth year, Brain Tumour Support has been instrumental in many developments within the brain tumour community and Tina continues to steer the charity towards a very patient-focused future. The charity’s vision is that no one feels alone when facing the effects of a brain tumour diagnosis. The charity’s working partnership with Macmillan is now well established and has resulted in the charity becoming one of the leading providers in patient support through its wide network of patient and carer groups, specialist counsellors and support workers. They also have a key role in raising public awareness of the devastating impact of brain tumours. Watching Paul battle his illness with such humility, incredible faith and courage, Tina’s personal experience of caring for and losing such a wonderful person has given her the determination to ensure that Brain Tumour Support will continue to make a positive difference to the lives of all the families who face a similar journey.

Yuko Moue

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Yuko Moue’s daughter was diagnosed with a medulloblastoma brain tumour and treated by operation, partial radiation and

allogeneic stem cell transplantation in 1998 when she was one year and five months. Yuko’s daughter is now 20 years old and still has some treatments for complications and late effects such as endocrine disorder, fertility problems, and teeth bud hypoplasia. Yuko participates in the Pediatric Brain Tumor Network of Japan (PBTN) which is a self-support family group to improve quality of life. She has been Representative of PBTN since 2014. As each pediatric brain tumor is a very rare disease, patients and their families cannot easily come face-to-face to exchange information about the diseases and their problems. PBTN has organized an internet website community for patients’ families for almost 12 years. Many website communities such as those for craniopharyngioma, germ cell tumor, brainstem tumours, ependymoma tumours, and additionally regional groups were born from the PBTN website. As well as commnunications on the web, PBTN also organises camping for patients and their families every year in summer and makes efforts to strengthen bonds between them. Yuko also has helped the network of 29 pediatric cancer patients families’ groups since 2008 by using mailing lists. On behalf of them, she sought the improvement of the medical care system for pediatric cancers when she was a member of the National Council for Promoting Anti-Cancer Measures initiated by the Ministry of Health, Labor and Welfare of Japan during 2011. As a result, the Japanese government has begun to emphasize action within the pediatric cancer medical system, especially for intractable types of cancer, including pediatric brain tumors, since 2012. Yuko again joined the National Council for Promoting AntiCancer Measures to seek the improvement for rare and pediatric cancers during 2015-2017.

Thierry Muanza

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Thierry M. Muanza, B.A., M.Sc., M.D., FRCPC, is an Assistant Professor to the Departments of Oncology and an Associate Member of the Departments Experimental Medicine and Neurology & Neurosurgery of the Faculty of Medicine at McGill University. He is also the co-Medical Director of the Adolescent and Young Adult Oncology Program. Following a Bachelor’s degree in biology at Suffolk University and a Master’s degree in biomedical sciences from Northeastern University in Boston, MA, USA, Dr. Muanza obtained his Doctor of Medicine (MD) degree from the Université de Sherbrooke, Quebec, Canada. He subsequently pursued his residency in radiation oncology at McGill University, as well as a Translational Research Fellowship, ASTRO-NCI, in radiation oncology at the National Institutes of Health in Bethesda, Maryland, USA.

105

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Dr Muanza is also a member of the Board of Directors, Brain Tumor Foundation of Canada. Dr. Muanza is a Fellow of the Royal College of Physicians of Canada. Major Research Activities Clinical: Clinical trials in breast, lung, brain/central nervous system, adolescent and young adult cancers. Laboratory: Dr. Muanza’s laboratory work focuses on translational research, radio-oncology, molecular targeted therapies, and biomarkers.

Though the situation has improved slightly with the training of more neurosurgeons, it is still a far cry from meeting the needs of brain tumour patients in Zimbabwe. The ZBTA continues to face a lot of challenges as it is operating in a country experiencing an economic downturn. Despite these difficulties achievements have been realised through awareness campaigns and helping the brain tumour communities in Zimbabwe get support and access to brain tumour resource material. Most of the resource material was donated by brain tumour organisations around the world. Christine is a brain tumour patient advocate, operating in a resource-strained part of the world; she understands the challenges that face the sub-Saharan brain tumour patient and their families. Despite this challenge, she believes in the guiding principle: ‘Every human life matters’ and is working to bring change. She believes: “A tiny change today brings a dramatically different tomorrow” (Richard Bach). Christine is a social worker by profession, and committee member of the International Committee of the British Association of Social Workers (BASW). She is about to complete her MSC Palliative Care Degree with De Montfort University (part time) in the United Kingdom.

Wilson Mugarura

. . . . . . . . . . . . . . . . . . . . . . . . . . . . My name is Wilson Mugarura. I am aged 47 years. I am a trained theologian from Alpha-Omega Seminary, Jinja and Glad Tidings Bible College, Makerere, Kampala, Uganda. I am currently pastoring Rushere Full Gospel Church, in Kiruhura district, Uganda. I am married to Dr Bonitta Kafureka. We have a daughter, Ruth Bonitta Winfred Nkaikiriza. On 26th July 2014, I had a seizure and lost consciousness. I regained consciousness and was put on drugs that relieved the pressure that the tumour was exerting on the brain. I had a successful surgery at Yashoda Hospital on 14th August 2014. I am well now, though with some numbness and paralysis on the right side of my body.

Christine Mungoshi

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Christine Mungoshi is the Director of the Zimbabwe Brain Tumour Association (ZBTA). She helped found the ZBTA after her daughter Paidamoyo was diagnosed with a brain tumour. In her efforts to seek treatment for her child she was confronted with many challenges as there was limited information on brain tumours, and no equipment available in the country to treat her daughter’s tumour. With only three neurosurgeons serving fourteen million people at that time the situation was dire.

106

Luke Mungoshi

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Luke Mungoshi is a committed volunteer with the Zimbabwe Brain Tumour Association (ZBTA), providing a lot of support first to the efforts to establish the ZBTA as a functional organisation; and then in continued work with the brain tumour community in Zimbabwe. Though his work experience is not congruent with the volunteering role that he is doing now, he has sought to gain the required skills through his experiences and interest in helping. Luke is a retired aircraft armament technician. He retired from the Air Force of Zimbabwe after serving for twenty years. He has vast experience in fighter aircraft maintenance and training which saw him seek further training and thus served as a technical instructor for the ten years preceding his retirement from the Force. Luke is a qualified aircraft technician and he holds various certificates in structural techniques, aircraft safety precautions and a noncommissioned officers’ senior management course. Luke believes increased efforts will eventually bring change to the brain tumour situation in Zimbabwe and sub-saharan Africa.

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

William Mungoshi

awarded a clinical fellowship at the National Institutes of Health. After residency, he completed two years of further fellowship training in neurosurgical oncology and tumor immunology at UT MD Anderson Cancer Center in Houston, Texas. His clinical specialty is the surgical management of benign and malignant brain tumors, and his research focuses on the study of immunosuppression in the glioma microenvironment as well as the use of non-coding RNAs as a novel immune therapeutic approach for glioblastomas.

. . . . . . . . . . . . . . . . . . . . . . . . . . . . William Junior Mungoshi is a pharmacist by profession and was drawn into the profession by his quest to better understand cancer treatment drugs and human physiology after his sister was affected by and later succumbed to a brain tumour. He set out even at a young age to get into medical practice and to help other people affected by brain tumours in Zimbabwe. William has been a volunteer with the Zimbabwe Brain Tumour Association (ZBTA) since he was in high school. He was featured in a story by The Promota magazine in 2006 as part of a group of high school science students visiting patients in neuro wards in Harare, offering their services and support. Now as a pharmacist, William is still involved with the ZBTA helping patients and their families to understand their condition, and offering information and advice where possible. He advocates for more accessibility and affordability of cancer drugs in Zimbabwe by presenting his findings through his work with the Zimbabwe Brain Tumour Association at pharmacist symposiums. He also advocates for a better livelihood for patients and their families affected by brain tumours in light of Zimbabwe’s economic challenges. Ultimately, William’s life goal is having a cancer drug manufacturing plant in Zimbabwe to serve Zimbabwe and the Southern African region. William believes this will help increase accessibility and affordability of cancer drugs to save more lives. [Editor’s note: at the last minute, William was unfortunately unable to attend the IBTA Summit]

Edjah Nduom

. . . . . . . . . . . . . . . . . . . . . . . . . . . .

Centre for Palliative Care, University of Worcester, UK

Brian Nyatanga

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Brian Nyatanga is a Senior Lecturer and Academic Lead for the Centre for Palliative Care at the University of Worcester, England, UK, where he also has an international teaching and training remit both in the UK and abroad. He has over 30 years of clinical and educational experience in palliative care. He has worked in hospices, hospitals and the community. He is passionate about delivering high quality palliative care for all patients but more so for those issues deemed important to the patient, as we only have one chance to get it right. Brian is aware of the emotional demands of caring for dying people and believes health care professionals deserve better social support in order to continue caring. His doctoral research thesis looked at caring and its relationship to death anxiety and burnout among palliative care nurses. Since we all now live in multicultural societies, Brian is also interested in cultural aspects of care and how we can remain culturally competent while delivering care to a diverse patient group. Some of his arguments are outlined in his extensive publications, from editorials, commentaries and articles, to books including the classic text “Why is it so difficult to die?” now in its second edition. He has also just published his co-edited second edition book “Palliative and End of Life Care in Nursing - 2017”. He is an accredited facilitator for the Connected Advanced Communication Skills Training using professional actors. He also has had experience as accredited facilitator with the NHS Leadership Qualities Framework, and he is an experienced assessor/profiler for personal development/plans. A family man who believes in work–life balance, he is often seen on a squash court and football refereeing at weekends.

Edjah Nduom, MD is a neurosurgical oncologist in the Surgical Neurology Branch of the National Institutes of Health of the United States of America. He studied biomechanical engineering at Stanford University and then attended medical school at the University of Pennsylvania. He pursued his primary neurosurgical training at Emory University School of Medicine in Atlanta, Georgia, during which he was

107

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

INTERNATIONAL BRAIN TUMOUR ALLIANCE

Gordon Oliver

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Gordon Oliver is a Co-Director of the International Brain Tumour Alliance (IBTA) and is married to Kathy Oliver. Their son, Colin, was diagnosed with a brain tumour in 2004 and tragically passed away in August 2011, age 32. The Olivers have a daughter, Miranda, who is a primary school teacher and is married to Keith Baxter-Russell. Gordon has been a partner in the Central London law firm of Hamlins LLP from 1982 until May 2015. He now provides consultancy services including to that firm. Born and brought up in Wales, UK, Gordon was educated in England and graduated from King’s London. Throughout his career he has specialized in commercial and company law, and latterly in anti-corruption systems and procedures for internationally-based groups of companies. Family life is very important to him but he can occasionally be found working on an old car. Best thinking time.

Other activities include: representing Rare Diseases Europe (EURORDIS) on the European Commission Expert Group on Cancer Control; member, steering committee for EURACAN (the European Reference Network/ERN for rare adult solid tumours) and the ERN for brain and CNS tumours; member, EANO Palliative, Supportive/End-ofLife Care Task Force; member, All.Can (improving efficiency in cancer care through focussing on patient outcomes); founding member, Rare Cancers Europe; Vice-Chair, ECCO Patient Advisory Committee; member, Society for Neuro-Oncology Guidelines Committee; member, ESMO Patient Advocacy Working Group; editor/publisher, Brain Tumour magazine; patient expert, European Medicines Agency (EMA); patient reviewer, EORTC; member, various industry patient advisory boards; founder member/former board member, Cancer52, (UK umbrella for rare and less common cancer organisations); member, NCRI Brain Tumour Clinical Studies Group sub-group on Palliative and Supportive Care; consumer representative, Cochrane Neuro-Oncology Group; member, British Neuro-Oncology Society Council; European Patients’ Academy on Therapeutic Innovation (EUPATI) Fellow and former Co-chair, Project Advisory Board, EUPATI; member, EORTC SISAQOL initiative (“Setting International Standards in Analysing Patient-Reported Outcomes and Quality of Life Endpoints Data”).

INTERNATIONAL BRAIN TUMOUR ALLIANCE

Sally Payne INTERNATIONAL BRAIN TUMOUR ALLIANCE

Kathy Oliver

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Kathy Oliver is Chair and a founding Co-Director of the International Brain Tumour Alliance (IBTA). She is married to the IBTA’ Co-Director Gordon Oliver. Their son Colin, was diagnosed with a brain tumor in 2004 at age 24 and passed away in 2011 at age 32. Kathy advocates for equitable access to brain tumour therapies and support, encourages the establishment of brain tumour patient organizations in countries where they don’t yet exist and raises awareness of the challenges associated with this devastating disease. She is a frequent plenary speaker at international neuro-oncology and cancer conferences having, to date, delivered nearly 75 presentations on various aspects of the brain tumour/cancer patient perspective. She has authored/co-authored papers published in The Lancet Oncology, Journal of Cancer Policy, British Journal of Neuroscience Nursing, Parliament Magazine, EANO Magazine, WFNOS Magazine, The Oncologist and eCancer Medical Science. She is the recipient of the NBTS Community Leader Award (2010), the EANO Award (2011), the 5th International Conference on Future Trends in the Treatment of Brain Tumours Award (2013) and the Healtheo360 Human Spirit Award (2017).

108

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Sally Payne is the Associate Dean of Studies at a University Pathway College in Sydney, Australia. Sally’s younger sister was diagnosed with an anaplastic astrocytoma in 2005 which prompted Sally to start researching the disease and the support available. Sally came across Denis Strangman and Kathy Oliver online in the early stages of the IBTA and was impressed with the international perspective and approach to patient advocacy. Sally helped set up and continues to maintain the IBTA’s unique brain tumour database of 11,000 contacts that is used to send monthly e-newsletters and the yearly IBTA magazine, Brain Tumour, to many countries around the world. Sally also assists the IBTA with planning and strategic direction. Sally’s sister died in 2011 and the journey over those six years has given her an insight into the issues faced by a number of developed but small population countries with the lack of clinical trials and experienced neuro-oncology nurses and facilities.

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

European Organisation for Research and Treatment of Cancer (EORTC)

Madeline Pe

Bec Picone

Dr. Madeline Pe is a Specialist in Quality of Life at the European Organisation for Research and Treatment of Cancer (EORTC) in Brussels, Belgium. She is involved in setting-up, conceptualizing and coordinating the work of the “Setting International Standards in Analysing PatientReported Outcomes and Quality of Life Endpoints Data” (SISAQOL) Consortium, an international, multidisciplinary group comprised of key quality of life researchers, statisticians, clinicians, regulators, patient representatives, and other stakeholders . The goal of the Consortium is to develop recommendations for standardising the analysis and interpretation of patient reported outcomes and quality of life data in randomized cancer trials. Madeline is also involved in coordinating and providing scientific support for various quality of life research activities at EORTC. Madeline has over eight years of experience developing questionnaires, setting up studies and analyzing patient/participantreported data in different research fields, such as education and mental health. Prior to EORTC, she worked at the National Institute of Education (NIE) in Singapore and at the KU Leuven in Belgium.

Bec Picone is Founder and Director of Australian-based brain cancer charity ‘Peace of Mind Foundation’. Bec’s personal family experience with brain cancer led to her passion and interest in brain cancer; and eventually the formation of her own support organisation for people affected by the disease. Bec and her brother Clinton formed Peace of Mind Foundation in December 2013 after the death of Clinton’s wife, and have had the privilege and opportunity to provide financial, emotional and/or practical support to hundreds of brain cancer-affected families across Australia. Bec is a driven patient advocate, strong public speaker and has used her prior event management skills to launch Australia’s first ever brain cancer retreats for patients, carers and family members. Outside of her brain cancer work, Bec is a busy single mum, choir/singing teacher and volunteer event organiser for various local projects within her community.

. . . . . . . . . . . . . . . . . . . . . . . . . . . .

European Medicines Agency (EMA)

Elias Pean

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Elias Pean is Product Lead at the European Medicines Agency (EMA) working in the Office of Oncology, Haematology and Diagnostics since 2009. The EMA is responsible for the scientific evaluation, supervision and safety monitoring of medicines in the European Union (EU). He has been involved in the review of anti-cancer medicinal products and coordination of several projects within the EU network of national regulatory agencies, including the topics of biomarkers, post authorisation studies, health technology assessments (HTAs). Prior to that, he has worked in the pharmaceutical industry in the development of several medicinal products in the cancer and central nervous system (CNS) therapeutic areas. Elias Pean is a Doctor in Pharmacy and holds a Master’s in international development and registration of medicinal products.

. . . . . . . . . . . . . . . . . . . . . . . . . . . .

Linda Rickford

. . . . . . . . . . . . . . . . . . . . . . . . . . . . My son, David, was diagnosed at the age of 28 with an ependymoma grade 2 in the 4th ventricle having previously recovered from Hodgkin’s Lymphoma. He was misdiagnosed several times and this led to me becoming passionate about raising awareness of the symptoms of brain tumours amongst both parents and professionals. We were told that the tumour may have been caused by the radiotherapy he had for the Hodgkin’s and it just seemed so unfair and cruel that the supposed cure for cancer could actually cause another cancer. After searching for information I realised, with deep despair, that there was no known cure and that there was little research going on into this rare type of brain tumour. I stumbled across Astro Brain Tumour Fund (www.astrofund.org.uk) the only UK charity to raise funds exclusively for research into low grade gliomas and started fundraising for them. I was invited to become a trustee, which I accepted, and as well

109

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

as trying to raise awareness of brain tumours, campaigning and lobbying, I now moderate and administer the support groups. There are people from all over the world who have low grade gliomas in our Facebook support group, and who are happy to share experiences and information, and support each other.

environment for patients and carers to support each other directly. He is particularly interested in leveraging IT to help charities and NGOs punch above their weight, with limited staff and resources. He works for Save the Children UK as a Knowledge Management Advisor. Adrian is a meningioma patient himself, having undergone two craniotomies and a six-week course of radiotherapy in the 2008 – 2010 period.

Karen Risgaard

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Karen Risgaard’s husband was diagnosed with a GBM in March 2010 and he died in July 2011. Karen and her husband together gave a presentation at the first “Brain Tumor Day” held in Copenhagen in April 2011. After the “Brain Tumor Day” Karen participated in creating a network for brain tumor patients in Denmark, which was changed into a Brain Tumor Association in April 2012. Since 2016, Karen has been the Chairman of the “HjernetumorForeningen”, as the association is called in Danish. Karen, besides being Chairman, is supervisor for groups of patients, relatives and people left behind. She has given several presentations at meetings and conferences, all concerned about the challenges for the patient and their relatives, when you are diagnosed with a brain tumor, and especially if the patient has cognitive deficits. Karen graduated as a physiotherapist in 1978. She has been working with patients with neurological diseases most of her professional career, first as a physiotherapist at hospitals, second as lecturer in physiotherapy for many years. In 2008 she became Principal for a center for rehabilitation for brain damaged people, which unfortunately was disbanded in 2011. She is now retired.

Adrian Samuels

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Adrian has been a trustee of Meningioma UK for some years. He has a focus on the IT aspects of the charity, having been in IT much of his working life. He also sets up and manages an active, closed Facebook group with roughly 1,500 members, which offers a secure

110

Simone Silenzi

. . . . . . . . . . . . . . . . . . . . . . . . . . . . My mother Stella was diagnosed with a glioblastoma brain tumour in February 2007 at the age of 59 and she passed away in October 2010. In January 2009, I decided to begin sharing the large amount of information I gained from my intense research on the web and through interaction with doctors, patients, and caregivers. Social networks were catching on at that time, so I decided to take advantage of this brand new type of communication to let people share their own experience about glioblastoma and improve brain tumour patient conditions through political lobbying. That’s why I founded the Discussions (and actions) Group “Italia – Glioblastoma Multiforme – cancro al cervello” (www.facebook. com/groups/italia.glioblastoma.multiforme ), an actual experiment and collective laboratory with hundreds of cases discussed. The group’s logo is a window which represents the landscape outside the very window of my mother and father’s room during one of our “journey’s of hope”. In my everyday life I work as an insurance clerk but since the cancer diagnosis onward, I have spent most of my spare time managing the Group (frequented by over 10,000 people and currently with 5,256 effective members), taking part in meetings dealing with health care system and organizing meetings with politicians, patients, associations, health institutions, doctors, researchers and any sympathetic people who want to help. I have met with the Italian Data Protection Authority, the President of the Chamber of Deputies, and members of the Parliamentary Committee for Social Affairs and Health. At the operational level, the group has formally proposed to the Ministry of Health and the Chairman of the National Institute of Health to establishment a National Clinical Registry on Glioblastoma not only as a specific disease registry but an actual medical treatment unit. To coordinate this, I’ve offered at no additional cost or work for the health system, to try and achieve over a period of three to five years within the institutions a prototype model exportable to other diseases.

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Paul Skinner

Maria Solomou

Paul Skinner is married to Tina Mitchell Skinner, Founder and Chief Executive Officer of UK charity Brain Tumour Support. He therefore has a keen interest in the work of the charity, the treatment of brain tumours and the support of people whom they affect. Paul has an engineering background and is Director and General Manager for Renishaw Neuro Solutions, a UK based engineering company focused on developing products to assist neurosurgeons in the treatment of a wide range of neurological conditions . He assists with the work of Brain Tumour Support on a voluntary basis.

Maria Solomou studied Human Relations-Communication and Effective Speaking at the University of Dale Carnegie, USA and also in Greece at the Athens University of Technology, Medical Laboratory Science. She is employed by the Ministry of Health in Cyprus in the diagnostic laboratories in one of Nicosiaâ&#x20AC;&#x2122;s main hospitals since 1986. In 2008, she promoted the creation of the Cyprus Brain Tumour Association, in the model of the IBTA. Having personal experiences as a patient herself, through the Cyprus Brain Tumour Association, of which she serves as president, she struggled for the recognition of the special needs of brain tumour patients in Cyprus, as well as to increase public awareness in early symptom recognition.

. . . . . . . . . . . . . . . . . . . . . . . . . . .

. . . . . . . . . . . . . . . . . . . . . . . . . . . .

Jeff Sloan

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Jeff A. Sloan, Ph.D. is Professor of Biostatistics and Oncology at the Mayo Clinic in Rochester, Minnesota, USA. Dr. Sloan is also the Chair of the Quality of Life Research Initiative at the Mayo Clinic and the Health Outcomes Committee for the Alliance Cancer Research Group. Dr. Sloan was trained as a mathematical statistician, obtaining his doctorate from the University of Manitoba, Canada in 1991. He held appointments in the Faculty of Nursing at the University of Manitoba for ten years before coming to the Mayo Clinic in 1995. He has over 25 years of experience as a statistical consultant and researcher into measurement issues and clinical trials. Dr. Sloan is also the lead statistician for the Alliance NCORP Cancer Control Program. Other areas of emphasis have included phase I clinical trials, pediatric oncology, and lung cancer. Widely published with over 575 peer-reviewed citations, Dr. Sloan has focused recent research activities on methods of assessing quality of life (QOL) of cancer patients and other patient-reported outcomes. Determining a clinically meaningful difference in these measures, combining survival and toxicity endpoints, exploring the relationship between patient-reported outcomes and genetic makeup, and finding ways to facilitate the incorporation of patient-reported outcomes into clinical practice have been specific areas of interest within the past two years. Most recently Dr. Sloanâ&#x20AC;&#x2122;s research demonstrating that simple single item measures of patient QOL domains are prognostic for survival has led to their routine incorporation into oncology clinical practice for every patient visit at Mayo.

Bonita Suckling

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Bonita Suckling founded Rainbows and Smiles when her only son, Jed, was diagnosed with a high grade brain tumour: anaplastic astrocytoma. Rainbows and Smiles Foundation is a charitable organization dedicated to providing assistance in the form of emotional, social and financial support to families and caregivers in need when a child or children of that family is/are diagnosed with cancer. This is achieved through coordination with the hospital facilities, social welfare and medical professionals. Bonita naturally has a special interest in brain tumours. Rainbows and Smiles is a team of nine passionate team members and a few volunteers who drive the fight against childhood cancer in South Africa. Four of the mothers who work with the Foundation have lost their children to cancer. The assistance offered by Rainbows and Smiles is in the form of payment of medical bills, provision of toys, gifts and awareness items and grants directly to children, their families or caregivers. Rainbows and Smiles solicits funds through various events, from corporate companies and fundraising activities. The poverty rate in South Africa is heart breaking with many rural families sometimes

111

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

skipping treatment due to a lack of funds for transportation to and from the hospital. Rainbows and Smiles does not discriminate based on race, culture, religion, financial status or any other factor. We believe in providing hope and laughter as the family finds strength beyond the illness. We will strive to support children battling childhood cancer whilst advocating awareness initiatives through ongoing education of the early warning signs of childhood cancer. The organisation also promotes the Gold Ribbon (a symbol for childhood cancer) in order to raise the profile of childhood cancer throughout South Africa.

Hisato Tagawa

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Hisato Tagawa is Vice-President of the Japan Brain Tumor Alliance (JBTA) and President of the Yokohama Children’s Hospice Project. He lost his six-year-old daughter to a diffuse intrinsic pontine glioma (DIPG). It is hoped that treatment methods for malignant brain tumors will be elucidated and users of children’s hospice can be reduced. From 2015 Hisato Tagawa has been involved in activities to create a children’s hospice in Yokohama, aiming for completion in 2020.

Arimantas Tamasauskas

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Arimantas Tamašauskas PhD, Dr. Sci (Habil), professor, graduated from Kaunas Medical Institute in 1986. He is Director of the Neuroscience Institute- Lithuanian University of Health Sciences and Chairman of the Department of Neurosurgery, Lithuanian University of Health Sciences. He is a member of the Baltic Neurosurgical Association, member of the European Association of Neurosurgical Societies (EANS) and the World Federation of Neurosurgical Societies (WFNS), member of the International Society of Pituitary Surgeons, a member of the executive board of the European Skull Base Society, an international member of the Congress of Neurological Surgeons, Chairman of the Lithuanian Society of Skull Base Surgeons, member of the Union Européenne des Médecins Spécialistes (UEMS) section of Neurosurgery, member of JRAAC (Joint Residency Advisory and Accreditation Committee) of UEMS and EANS, member of BoMS ERN (Lithuania) and representative of the hospital to the EURACAN European Reference Network (ERN). PH.D. (Neurosurgery) awarded January 1994 for thesis “Neurosurgical management of patients with ruptured cerebral aneurysms in hospital population of Lithuania” in Kaunas Medical Academy. Habilitation (dr. sci (habil) neurosurgery) awarded April 2001 for thesis “Features of Surgical Management of the Intracranial Disorders in the Skull Base” in Kaunas Medical University. Research project evaluator (FP6, FP7, Horizon2020, WHO expert (neurosurgery). Invited lecturer in TATENA courses, European Skull Base Society (ESBS), European Association of Neurosurgical Societies (EANS) conferences and courses. “Master classes” in skull base surgery, neuro-oncology, vascular neurosurgery in Astana Neurosurgery Center, Almaty Neurosurgery department (2014-2016). Lead author and co-author of more than 200 scientific publications.

Gentaro Tajima

. . . . . . . . . . . . . . . . . . . . . . . . . . . . I was born in Osaka, Japan. I am married to Laureline Gatellier who is attending this IBTA Summit together with me. I would like you to share your knowledge about what you, as a brain tumor patient advocate, expect from the family, and to exchange ideas on how to create a better environment for brain tumor patients and their families.

Greater Accra Regional Hospital

Teddy Totimeh

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Dr. Teddy Totimeh trained as a neurosurgeon at Ghana’s premier medical teaching establishment and teaching hospital. He has spent additional time training in Israel, the US and Kenya.

112

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

He is currently a consultant neurosurgeon at the Greater Accra Regional Hospital and a part-time lecturer in neuro-anatomy. He also runs nationwide symposia on head trauma and primary trauma care. He is a 2017 Joanna Brigg’s Fellow conducting a best practices implementation survey in Greater Accra Regional Hospital on head injury management. A 2016 Eisenhower Fellow, Totimeh believes that empowering the private sector to handle critically ill patients is key to raising the profile of specialized healthcare in the country. He is collaborating with fellow doctors and entrepreneurs with a vision to build centres of excellence for acutely ill patients. Mentoring, education and equipping of these centres is key to improving the outcomes for all acutely ill patients. Together with his group, Totimeh is committed to organizing high quality well resourced educational conferences that directly impact standards of care in Ghana and in the sub region for neuro-oncology patients. A gifted writer, and a keen observer of the human heart and battles of being, Totimeh has published volumes of essays, short stories and a book of poetry. He blogs regularly on Linked In Pulse.

INTERNATIONAL BRAIN TUMOUR ALLIANCE

Chris Tse

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Chris is an IBTA Senior Advisor based in New Zealand. Chris became a brain tumour patient advocate through the inspiration of his wife Lynda, a long-term survivor of a glioblastoma. He has been a volunteer advisor to the IBTA since 2006, the year Lynda was first diagnosed. Currently he assists with managing the IBTA’s social media channels, helping maintain the website and providing editorial assistance with the monthly e-News and Brain Tumour magazine. The lack of effective brain tumour treatments available to Lynda motivated Chris to take a special interest in brain tumour research. He has represented the IBTA at several brain tumour conferences including the Society for Neuro-Oncology (SNO) and the Asian Society of Neuro-Oncology (ASNO), and is a member of COGNO (Co-operative Trials Group for Neuro-Oncology, Australia). He is listed with the European Medicines Agency (EMA) as a patient expert in the field of CNS tumours and with the European Organization for Research and Treatment of Cancer (EORTC) for which he has reviewed patient information documentation and clinical trial protocols. In his home country of New Zealand, Chris moderates two Facebook support groups for brain tumour patients and has written articles on brain tumours for the Cancer Society of New Zealand. Outside of the brain tumour world, Chris works as a marketing consultant specialising in doing business with Asia. Chris and Lynda live in the seaside suburb of Seatoun, in Wellington, New Zealand. They are the proud parents of Cassandra, age 24, and Nathan, age 21.

Suzanne Wait

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Suzanne Wait is a Managing Director of The Health Policy Partnership. Over the past several years, she has helped run a number of multi-stakeholder policy initiatives, covering topics such as cancer care, hepatitis, diabetes, immuno-oncology, stroke prevention and cardiovascular disease. The challenge of inter-sectoral and multidisciplinary working has been a focal thread across all her work, as well as the need for sustainable and patient-focused health care systems. Suzanne has always had a strong personal interest in oncology and has worked on several aspects of cancer policy, most often in partnership with patient groups and professional thought-leaders. She currently leads the secretariat for All.Can (www.all-can.org), a multistakeholder initiative aimed at improving the efficiency of cancer care by focusing more on patient outcomes. Suzanne taught for five years at the School of Public Policy at University College London, is a former Nuffield Trust Research Fellow at the Judge Institute of Management at Cambridge University and was Adjunct Professor at the University of Strasbourg. She was Director of Research, and is currently an Advisor, at the International Longevity Centre-UK (ILC-UK), a London-based charity. She has authored a number of peer-reviewed publications. Suzanne has a Bachelor of Science from McGill University in Montreal, which is where she grew up. She also holds a Masters of Public Health from Columbia University and a PhD in Public Health from the University of Strasbourg. She is fluent in English, French, Italian and Spanish and has good working knowledge of German.

Emma Williams

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Emma set up the Matthew’s Friends charity in her son’s name in 2004 after Matthew’s dramatic response to the ketogenic diet. Matthew’s Friends is now known globally for its work in this highly specialised field with registered branches in both Canada and New Zealand. In 2011 they opened their own clinic in the UK and 2016 saw the launch of their ‘Ketocollege’ training programme for medical professionals.

113

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Medical ketogenic therapies are currently being used for drug resistant epilepsy, certain metabolic disorders and more recently the investigation of possible benefits in the treatment of brain tumours. The Matthew’s Friends clinic supports a large cohort of patients using ketogenic therapies as an adjunctive to standard of care treatment and is in the process of setting up a clinical trial, working with brain tumour charities and medical partners in the UK, and working especially closely with the Astro Brain Tumour Fund. Emma is a leading advocate of these therapies and an International Patron of Diets for Epilepsy in India, the only non-medical member of the International League Against Epilepsy global task force on dietary therapy and is now serving on the Executive Board for the Global Symposia for Ketogenic Dietary Therapies and the European Reference Network for Rare and Complex Epilepsies. In June 2013 Emma was recognised by Her Majesty The Queen and awarded an MBE in the Queen’s Birthday Honours list for her services to children with epilepsy.

As Head of Support for Brain Tumour Support she is responsible for the effective running of the charity’s support service. The support service team comprises of six brain tumour support workers, a support service co-ordinator, a volunteer co-ordinator and an experienced counsellor based at the charity’s head office in Thornbury. The charity works very closely with Macmillan Cancer Support and other organisations striving to improve the lives of those affected by a brain tumour diagnosis. Rosemary was brought into the ‘brain tumour community’ 20 years ago when her daughter Frances was diagnosed with a non-malignant brain tumour when she was just three months old. Frances recovered well after treatment but was unfortunately diagnosed with a malignant tumour in 2005, when she was just eight years old and sadly died two years later. Frances continues to inspire her. The lack of emotional support available to patients and families motivated Rosemary to set up a support group in Worcester in 2007, with the help of family and friends. Then the opportunity came to join Brain Tumour Support and she is now doing the job of her dreams, helping to make a difference to people affected by a brain tumour diagnosis. Rosemary lives in Worcestershire with her husband John. Their son Alistair has recently started university. Outside of work she is heavily involved with an award winning community village shop and is a local junior church leader.

Nicole Willmarth

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Nicole joined the ABTA in 2015 as Chief Science Officer overseeing the strategic direction, expansion and operation of the ABTA’s scientific and research grants program. Previously, Nicole worked at Susan G. Komen® responsible for the business and science management of Komen’s portfolio of funded research program grants. Nicole began her career in scientific grant management with the American Association for Cancer Research (AACR) where she developed, launched and managed several mechanisms as part of AACR’s donor-directed research grant programs. Nicole has a Ph.D. in Cellular and Molecular Biology at the University of Michigan and completed a postdoctoral fellowship. She has published research in a number of peer reviewed scientific journals.

Rosemary Wormington

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Rosemary Wormington has worked for Brain Tumour Support for seven years. Previous to that she worked for 20 years in the NHS as a manager and then as a training and development advisor.

114

Gelareh Zadeh

. . . . . . . . . . . . . . . . . . . . . . . . . . . . Dr. Gelareh Zadeh, MD, PhD, FRCS(C), FAANS, is the Head of Surgical Oncology at University Health Network, Head of the Toronto Central Regional Cancer Program at Cancer Care Ontario, and also the Program Medical Director for the Krembil Neuroscience Centre at Toronto Western Hospital. She is a neurosurgeon-scientist at the Toronto Western Hospital and Princess Margaret Cancer Centre. She has a dedicated clinical and research program in neuro-oncology and neurosurgery. In addition, she is the Wilkins Family Chair for Brain Tumor Research, the co-Director of the Elizabeth Raab Neurofibromatosis Program, and the Director of the UHN Brain Tumor Biobank. Dr. Zadeh has a dedicated neuro-oncology and skull base practice, which includes a number of multidisciplinary specialized programs such as skull base, brain metastases, pituitary tumors, Gamma Knife and neurofibromatosis clinics. In parallel, she has an active research laboratory focusing on integrated multi-platform molecular analysis of brain tumors, together with a focus on understanding molecular response to targeted therapies, such as anti-angiogenesis and metabolic inhibitors. She is also involved in a number of national and international organizations, like the WFNS, NASBS, and SNO.

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

From the 2017 IBTA World Summit Album

Photos by MVF Studios

115

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

116

Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Photos by MVF Studios

117

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

118

Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Photos by MVF Studios

119

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

120

Photos by MVF Studios

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

Photos by MVF Studios

121

Third Biennial World Summit of Brain Tumour Patient Advocates, London, UK - 19th to 22nd October 2017

122

Photos by MVF Studios

INTERNATIONAL BRAIN TUMOUR ALLIANCE

Please join us in 2018!

and the

1 January - 31 December 2018

INTERNATIONAL BRAIN TUMOUR AWARENESS WEEK 20 - 27 October 2018

The IBTA requires no financial commitment from your organisation to be a supporter. Contact kathy@theibta.org

YOUR SUPPORT OF THESE TWO POPULAR GLOBAL EVENTS WILL FURTHER HELP BRAIN TUMOUR PATIENTS TO DEAL WITH THE CHALLENGES THEY FACE. Photos by MVF Studios

123

MORE RESEARCH AND SUPPORT

theibta 124

Photos by MVF Studios

The International Brain Tumour Alliance