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Logbook THE MAGAZINE FROM
brainstrust – the brain cancer people
The improvements we need to see in brain tumour care: page 3 Save lives – be a brain tumour tissue donor: page 15 New portal offers you access to treatment records: page 17 Doing something bold for brain tumour support – Shavepril 2015 highlights: page 19
Brain tumour support 24/7.
Call 01983 292405 or email hello@brainstrust.org.uk
www.brainstrust.org.uk
Welcome to brainstrust’s 7th Logbook. Here we say thank you, to you, for everything you’re doing to help in our mission to put every brain tumour patient and carer back in the driving seat.
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ell, where to start? It’s been a while since we produced our last Logbook, well actually we’ve produced a few, but our work has progressed so fast, they’ve been out of date by the time we’re ready to send to press, so it’s been a circuitous process to get to where we are now. And even today, things will have moved on with brainstrust and brain tumour support since this touched down on your doormat. Today, we have provided direct phone or email support to our 2000th person. 25,000 people have used our online support and information in the past 12 months, many thousands more our online community (which has over 2000 active members) and we held our 100th Meet Up in June, which was also attended by the 480th beneficiary of these incredible groups. The last 12 months have also seen us formalise and focus our campaigning efforts. After years of observing how others try to do this, we know how to make things better for brain tumour patients and carers in the UK. By understanding the real issues people face, putting patients at the centre of brain tumour research, and campaigning for increased levels of brain tumour tissue consent and by focusing our efforts on the patient and clinical community we will be able to put the world right for people with a brain tumour, the right way. We wouldn’t have been able to do any of this without your help. From a standing start, in 2006, you have raised a total of £2.25m for brain tumour support. You have helped us create a new area of focus for charities that didn’t previously exist: when we started brainstrust, there was no meaningful, dedicated help for you when you were told you had a brain tumour. Today a number of organisations have followed in offering support of some sort in addition to their wider work. You have created a movement, a whole new sector that helps people with a brain tumour. But things still need to get better. At the moment, by raising and spending around £430,000 each year we are able to help around 30,000 people (25,000 online and 5000 in the ‘real world’), but we want this to change. We want to be helping more of the 60,000 people living with a brain tumour, and the countless number of carers who tirelessly look after these people. We want to do this without compromising our hugely impactful service and to do so we anticipate needing to raise around £1m each and every year, and never much more. In the grand scheme of things, this isn’t a huge amount, and we’re ready for the challenge – but we still need your help. Are you ready for this challenge too? Thank you for getting us this far; here’s to the next 6 months until our next Logbook. Together we will change the world for people diagnosed with a brain tumour, helping them to feel less alone, less afraid and more in control in the face of a devastating diagnosis.
the brainstrust team x
Cover Photo: team brainstrust runners at the British London 10K
team
Events & challenges
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rom April 2014 to March 2015, over 280 incredible supporters ran, cycled, walked, climbed, rowed a boat or jumped out of an aeroplane to raise money for brainstrust.
As well as the places we buy to offer to our supporters, we are very lucky that many people enter events and choose to fundraise for us. Every one of our fundraisers receives one of our fundraising packs and a team brainstrust running shirt to wear on the day, to help us raise awareness as well as funds. A focus this year has been for us to increase corporate match funding. We know that the majority of our fundraisers work. Many companies will have match funding schemes in place which enable employers to donate the same amount as raised by the employee. Our team brainstrust participants have raised just over £100,000 this year and this income funds a quarter of our work. To allow us to reach more patients, carers and their families, we need new supporters to take on a challenge in 2015 and 2016 and the years to come. Maybe you have always wanted to try something new? Now is the time to do it so that we can help more people with a brain tumour to feel less afraid and more in control. We have places in many events nationwide, so please get in touch for more information: tessa@brainstrust.org.uk A full list of team brainstrust events for this year can be found at www.brainstrust.org.uk/join-inevents.php
Our new report pinpoints improvements needed in brain tumour care Quality of life : wh community nee at the brain cancer ds
For 9 years we’ve been listening, and helping people with a brain tumour. From this interaction with our community, we’ve been able to review the journey that patients go on following a diagnosis.
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ver the past 12 months we’ve been pulling together everything that we’ve learnt into our new report Quality of life: what the brain cancer community needs. In this we pinpoint vital changes that need to be made to care, changes which will improve your quality of life. Now it’s time to stop ‘weighing the pig’. It’s time to start helping people with a brain tumour to get everything they need, as soon as possible.
What does this mean for the brain tumour community? It means that alongside helping you feel less afraid, less alone and more in control in the face of a terrifying diagnosis, we will be working harder than ever to help you face additional challenges. We’re building new resources which will include information to prepare you for the challenges ahead, and workshops to build resilience and put
And what do they need? This: n
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To be able to get hold of a Nurse Specialist Clear signposting of care in the community
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Access to rehabilitation
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Quicker scan results
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The right information at the right time
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Equality of care across hospitals
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Public understanding
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The tools to deal with fatigue
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Clear expectations
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A more equal relationship with their doctors
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Early diagnosis
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To be able to get around
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More honest discussions sooner
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To know how to get what they want out of a discussion
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To not be alone
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To feel in control
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To know how to deal with death and dying.
The fight is so
much more than
the diagnosis.
We know.
you back in control. We’re working with leading clinicians to implement guidelines at a strategic level. And on a one to one basis, brainstrust will continue to support our community through coaching, meet ups and all of our existing work that’s so well received. We know that you’re desperate for more information about what to expect when living with a brain tumour. We also know that you need more understanding about what could happen in the time ahead, so that you can be proactive and not reactive. And, we know too that the current lack of information is having devastating effects upon your quality of life. “We didn’t hear about late effects until they started to become evident. We could have got on with doing some of the travelling we’d hoped to do while things were easier” Carer All of our new work will help you be more prepared for challenges and have a better quality of life – something that we know is of utmost importance to you. And, a better quality of life often means a better outcome. We know. You can read our new report at www.brainstrust.org.uk/qualityof-life.php
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Turning the world grey for brain tumour awareness Each year we wear grey for a day in order to make the world pay attention to the devastating impact that brain tumours have.
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e know that any type of brain tumour is devastating. A diagnosis is terrifying, isolating and confusing and symptoms like memory loss, exhaustion and personality change can come with a tumour of any grade. “Every month I am able to do less and less and I’m withdrawing more. I ran a marathon in 2006, now I can’t walk without a crutch. I want me back” – Patient “The tumour has changed my wife’s personality so much I no longer see the person I married and love. I feel so alone and trapped” – Carer
By wearing grey, as a community, we make the world notice brain tumours. And, we raise funds so that those facing the devastating challenges can get the support that they need.
Wear Grey just gets bigger and better every year We’re always amazed by the number of people who put on their grey and make a stand for brain tumours. Year after year we see people turning their workplaces, schools and homes grey, so that brain tumours get the attention that they need. In fact, in 2014 Wear Grey even went international, with supporters from 29 different countries going grey and spreading awareness as far and wide as far and wide as Australia, China and Morocco.
Wear Grey with us in 2016 Yes, you can already sign up for next year. If you’d like to register then simply email kathryn@brainstrust.org.uk Make sure you have a look at all of the activity from Wear Grey for a Day 2015 over at www.facebook.com/brainstrust
It may be too early to officially announce, but we have a feeling that this year’s Wear Grey was the biggest and most creative yet. Bring on next year.
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Help us build a brain tumour support service to help 60,000 people A piece of work in partnership with the National Cancer Registration Service of Public Health England, and the National Cancer Intelligence Network has shown for the first time information on the number of people in England and Wales living with a brain tumour.
Prevalent cases of intracranial tumours
Brain: 29.57%
Glioblastoma: 2.00%
Identified on the Encore database – September 2013
Astrocytoma Grade 1–3: 8.77%
Glioma low Grade: 1.30% Glioma Grade unknown: 6.61%
Intracranial endocrine: 24.67% Pituitary adenoma: 19.62%
Medulloblastoma: 1.77%
Benign uncertain unspecified other: 3.42%
Benign uncertain unspecified other: 6.68%
Malignant: 1.41%
Malignant uncertain unspecified other: 2.44%
Pineal: 0.22%
Intracranial endocrine: 24.67%
55,498
Cranial nerves: 15.38%
Nerve sheath tumour benign uncertain: 12.24%
Benign uncertain unspecified other: 1.99%
Cranial nerves: 15.38%
Cerebral meninges: 29.36%
CNS unspecified: 1.01% ** Excludes –20% increase increase Excludes London London and and the the South South East, East, we we can can assume assume aa 10 10–20% in total prevalence to take into account these areas.
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e now know categorically that there are over 55,498 people living in England and Wales with a brain tumour. And there is potential for there to be a further 20% increase in this number when we have accurate data for London and the South East, and a further jump once we have data for Scotland, where we are also helping hundreds of people with a brain tumour and their carers.
Before today, we knew that around 8,600 people a year were diagnosed with a primary brain tumour, but knew that this figure did not reflect the real scale of the challenge that we face: after all, most people we bump into seem to know someone who has been hit by this devastating disease. With the potential for a 20% increase taken into account, there are around 60,000 people in the UK who could need brainstrust’s help coming to terms with a brain tumour diagnosis and the issues that can accompany this news. Our new report, the culmination of 9 years work, (more on page 3) pinpoints these issues, as follows:
people living with a brain tumour in England*
Malignant uncertain unspecified other: 1.15%
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Brain: 29.57%
There are enough people in England living with, and beyond a brain tumour diagnosis to fill
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Cerebral meninges: 29.36%
Meningioma Grade 1–2: 26.28% Meningioma Grade 3: 0.74%
Benign uncertain unspecified other: 2.21%
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Inabliity to get hold of a Nurse Specialist Lack of signposting to care in the community
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Limited access to rehabilitation
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Slow scan results
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Getting the right information at the right time
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Inequality of care across hospitals
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Lack of public understanding
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Fatigue
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Uncertain expectations
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Inequal relationship with doctors
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Late diagnosis
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Being unable to get around
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A need for honest discussions sooner
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Communciation
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Loneliness
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Lack of control
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To know how to deal with death and dying.
Will Jones, Director of Development here at brainstrust says, “This new data is eye opening. There is a huge number of people that are coping with the effects of a brain tumour, and we can only begin to imagine the burden on carers, particularly when many people have more than one carer. We are hopeful that we can continue to grow brainstrust, and the brain tumour support agenda, so all
brainstrust has been a shining light in my dark days. Just knowing someone is there is real comfort
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55,000 plus people, and their carers, can access everything they need to help them feel they are fighting for the best possible outcome for their diagnosis.”
What does this mean for the brain tumour community? Well there’s a lot to take in, and many ways to interpret the news. There are also lots of questions. Is this number getting bigger or smaller? How many people are living with a brain tumour in Scotland? How will the relationship between low grade and high grade tumours change over time? How many of these people can we help? How many of these people want help? Rest assured, we will know the answers to these questions and many more over time. If we want to glean some good news from this new information, we know that with this many people affected by the disease, no person battling a brain tumour should feel alone we can build an even bigger, stronger supportive community. And we know now that we need to work harder than ever here at brainstrust. We are here for anyone and everyone that needs us, and the leap from helping 1500 or so patients and carers to 60,000 or more is a big one, and we can only do it with your help and support. If you need help now, or would like to support us as we build a service to help 60,000 people, call or email 24/7 on 01983 292405 and hello@brainstrust.org.uk 7
Everest Pioneers including Stephen Venables and Ranulph Fiennes raise funds for brainstrust
An evening with
Julian Fellowes raises £20,000 for brain tumour support
Hyde Park Barracks in London, home of the Household Cavalry, was the venue for our ‘Evening with Julian Fellowes’ on the 2nd October.
Incredible evening with Stephen Venables and Sir Ranulph Fiennes raises over £36,000 for brain tumour support.
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1988©StephenVenables
As well as the talks by Fiennes and the ‘Neverest’ 1988 team, the event included a Champagne reception and dinner, and an auction. All proceeds went to brainstrust and our work to help people battling a brain tumour. Venables – whose son, Ollie, died with a brain tumour, aged 12 – is a patron of brainstrust. Venables was the only one of the four man ‘Neverest’ expedition team to reach the summit. He also set a world record for the highest solo bivouac and unlocked a new route up the mountain. The reunited expedition team also included Norbu Tenzing, son of Tenzing Norgay, who was with Sir Edmund Hillary on the first successful ascent of Everest in 1953.
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Venables and his expedition team – who were reuniting for the first time in 25 years – were introduced by Sir Ranulph Fiennes, who made a special guest appearance at the event. Fiennes told his audience: “Only twice have I feared for my life on a mountain, and on both occasions I was with Stephen”.
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Just before Christmas, we updated and relaunched the brainstrust shop. Using a new platform, it’s even easier to get your hands on Christmas cards, running shirts, and even new brain cells. Check out the store at shop.brainstrust.org.uk, and don’t worry, we promise no fusty old clothes on rails here, just nice shiny new things that you can get your hands on at a reasonable price to show your support for brain tumour support.
erstock.com
Paul J Martin/Shutterstock.com
ver 500 adventure enthusiasts packed into The Royal Geographical Society to hear Stephen Venables discuss how, in 1988, he became the first Briton to successfully reach the summit of Everest without supplementary oxygen, up a new route on the East face of the mountain.
New Shop
HE EVENING CONSISTED of a champagne reception for 115 guests and a 3 course dinner followed by our highly esteemed after dinner speaker, Lord Fellowes.
Guests were greeted at the entrance by two Blues and Royals in full uniform and dinner was announced by the regimental trumpeter. Each table of ten had a senior NCO or Warrant Officer joining it; they had all seen active service in Iraq or Afghanistan so could answer the many questions guests had. The room was resplendent with the regimental silver and we had 2 auction items between each courses. The items were unique, and included a personal tour for six people of the barracks followed by lunch in the Officers Mess, a table of ten at the Square Mile Salute – ‘A Night under LO GB O OK: ISSU E 7 – SEPTEMB ER 2015
Coming in 2016…
Your chance to do something HUGE for brain tumours.
Michelin Stars’ including Michel and Albert Roux. The auction raised £7,300 together with a draw for a bottle of Laurent Perrier Champagne raising an additional £841.00. Julian Fellowes gave a highly entertaining and humorous talk on his life including Downton Abbey and his Oscar winning Gosford Park. The evening was a resounding success with guests asking when the next one will be. The event was shared equally with the Household Cavalry Foundation, and raised in excess of £20,000.
50 miles. 2 days. On foot. Follow the Seagulls 2016. Visit www.brainstrust.org.uk/522/ seagulls for more information about this challenge of a lifetime. 9
What care should you expect More helpful resources as a brain tumour patient? from Check out the brain tumour brainstrust Receiving patient guide. D
Last summer we got together at London Zoo with a great group of families to launch ‘little brainstrust’ our new service dedicated to helping families where a child has been diagnosed with a brain tumour.
Diagnosis afte
r biopsy sources
brainstrust, Brain tumour symptoms and diagnosis, www.brainstrus available at t.org.uk/advice -symptoms.php Cambridge Unive rsity Hospitals, Living with a brain diagnosis and tumour: Brain tests, available tumour at www.cuh.org.u information_le k/resources/pdf aflets/PIN1624_ /patient_ brain_tumour_d iagnosis_and_te Choices, Prepa sts.pdf ring for your Canc er Test Results, www.nhs.uk/Liv ewell/cancer/P ages/Gettingyo urresults.aspx NICE, Improving Outcomes for people with brain June 2006, availa and other CNS ble at www.nice. tumours, org.uk/nicemed 28963/28963.pd ia/live/10905/ f National Canc er Peer Review Programme Manu Brain and CNS al for Cancer Servi Measures Versi ces: on 1.2 National Canc er Waiting Time s Monitoring Data www.datadictio Set, available at nary.nhs.uk/dat a_dictionary/m data_sets/natio essages/clinical nal_cancer_wa _data_sets/ iting_times_mon itoring_data_se Young, B, Stew t_fr.asp art, W, O’Dowd, G. Wheater’s Basic and review of Pathology: a text, histopathology atlas 5th edition, 2011.
Patient Guide
Patient Guide
iagnosis
A guide to care for brain tumour patients
diagnosis afte r biopsy 2
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The Little White Book
A comprehensive directory of brain tumour support services in the UK, by region.
Registered Charity No. 1114634 ber 2013, due for review Septem ber 2014 © brainstrust 2013
little brainstrust – nationally accessible and dedicated support service for children and families
Published Septem
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rainstrust has published a comprehensive, easy to understand guide to adult brain tumour care. The aim? To help patients know what to expect on their journey, and when.
Written with clinicians, patients and carers, and compliant with NHS England’s Information Standard, the guide translates the NHS and NICE 2006 Improving Outcomes Guidance (IOG) in a way that is accessible to patients.
It explains: n
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What happens at each point in the brain tumour pathway What the optimum standard of care is (according to the IOG) at each point of the pathway. Questions to ask Third party support available for each stage of the journey.
The guide is written in eight easy to understand sections, each relevant to different stages of a patient’s journey. It is freely available to brain tumour patients and doctors and nurses working in relevant specialties. Helen Bulbeck, Director of Policy and Services for brainstrust, says, “A lot happens after you are told you have a brain tumour, and this guide will help patients and carers know what to expect and understand how to engage in their care. We know 10
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A directory of resources to help affected by a people brain tumour
Edition 1: Septem
ber 2014
20/06/2015
Getting hold of the brain tumour patient guide The brain tumour patient guide is freely available to brain tumour patients and doctors and nurses working in relevant specialties. Simply visit www.brainstrust.org.uk/adviceresources.php and download the relevant sections, or give us a call on 01983 292405.
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HIS essential brainstrust service provides dedicated help with practical, emotional and financial challenges that hit families affected by a brain tumour diagnosis.
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How to hold a difficult conversation brainstrust-Difficult
Consultant Neurologist, Robin Grant, says, “The most important factor that helps people keep control over their life when brain cancer strikes, is knowledge – an understanding of what is going to happen, when it is going to happen and why it is going to happen in a simple understandable way. brainstrust has set the knowledge standard in this area.”
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that the fight is much harder than the diagnosis and treatment – this resource will help with this.” Clinicians across the UK are sharing the guide as part of their obligation, as outlined by the IOG, to provide relevant information to patients and carers.
the little
A guide to help families approach the difficult interactions that follow a brain tumour diagnosis, featuring tips that will help you clarify how you feel so that you can hold better conversations and be more in control.
Who’s who in your clinical team
We know that a brain tumour diagnosis is a huge blow for loved ones, and this can be even more devastating when the patient is a child. The brain tumour diagnosis and associated treatments bring a huge range of difficult practical, emotional and financial challenges for the whole family and young survivors are often left with a number of disabilities or special needs.
Who’s WHO in YOUR clinical team
A booklet to help you work out who to turn to, and for what.
Version 2.1: December 2013
For more information about each of these guides, and other brainstrust resources, visit www.brainstrust.org.uk/ advice-resources.php HYLYW-2.1 version.i
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500 children a year are diagnosed with a brain tumour, and there are thousands of families living with the disease. Two thirds of children diagnosed are left with a disability. Families can find communication difficult, and awareness of brain tumours in children is low; this is despite the fact that brain tumours now kill more children than any other illness in the UK. LO GB O OK: ISSU E 7 – SEPTEMB ER 2015
It’s because of this that ‘little brainstrust’ is needed. Meg Hill, herself once a young brain tumour patient, says, ‘When a family faces a brain tumour diagnosis, they have many unique challenges, particularly around communication, living with long term effects, feeling afraid and feeling alone. This dedicated, logical extension of brainstrust’s work will make sure that this group of people get the focussed help that they need.’ At the heart of the service is the new ‘little brainstrust’ website. The site has information on everything that families need when faced with this devastating scenario from tips on communicating to advice on some of the financial help available. There’s a new Little Brain Box available free of charge that is full of really useful resources to help families keep on top of things as they deal with the diagnosis. And of course it’s all backed up by our 24/7 coaching led support available by phone or email. We are also extending our programme of popular
‘Meet Ups’ to include events that are entertaining and useful to familes with children battling a brain tumour diagnosis. This work has only been possible thanks to the support of two brainstrust supporter groups – the Smiley Riley and Lucas Garrity Funds. Little brainstrust has also been fortunate to have secured some funding from the National Lottery’s Awards for All scheme, for which we are truly grateful.
Leaving no family feeling lost or alone We’re confident that this new dedicated national service has the potential to leave no family feeling lost or alone in their journey. To find out more about ‘little brainstrust’ and how to support our work here, pay a visit to the dedicated website at www.brainstrust.org. uk/little-brainstrust
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TEAFEST 2015
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e all know brain tumour support is built on tea, not coffee. Each year we ask you to celebrate the great British cuppa for a week by hosting a tea party, getting sponsored to do the office tea run or wearing a tea cosy on your head for a day. Basically, anything tea related that will raise money to help us support more patients and carers.
This year, our festival of tea really was bigger and better than ever. Alongside tea parties, cake sales and bucket collections, we saw the British cuppa go global, with one fundraiser’s party receiving donations from 4 different countries around the world and another hosting a teatasting spectacular which put our brew up against the teas of other nations. We had one brave supporter swap tea and cake to do a TEAFEST 10K, another hold a jewellery sale at their vintage accessories business and one teacelebration end up in the pub with a quiz. In total, these incredible efforts raised almost £4000 for brain tumour support in the UK. That’s a lot of tea!
One patient, who received some teabags in her brain box, has summed up why we need to fund support resources and celebrate tea in one comment.
Help that’s regionally relevant.
Nationally.
Our new Community Fundraiser
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uilding a brain tumour support service to help up to 60,000 people presents a substantial opportunity for us to make a big difference, but it’s going to take some doing. Our approach for the coming years is underpinned by a commitment to replicate the success that we’ve experienced to date. brainstrust has created a unique self sustaining approach to supporting patients and carers that meets a defined set of needs, and drives real improvements in patient and carer experience. The challenge we now face is to build capacity and scale up our work so that we can deliver this service to a much greater number of people without compromising our impact. The key to this is to deliver our support on a regional basis, nationally. We plan to achieve this scale by creating up to 12 regional centres that operate with all the support that’s needed from our head office. And we’re already up and running in Yorkshire, Glasgow, London and the South Coast. Your support will help us expand into more regions, sooner and help even more of the 60,000 people that needs us.
In July of this year we welcomed Kathryn Marshall to our fundraising team, Kathryn will be working with our supporters in London and the South East.
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athryn joins brainstrust with 20 years of professional fundraising experience under her belt and has worked not only in the UK, but also in America and New Zealand. She’s worked for many of the UK’s leading charities, inspiring supporters to fundraise in a huge variety of different ways, and is now ready and raring to be a part of the brainstrust community.
“I’m so excited to be joining brainstrust. The best thing about being a fundraiser is how different each day can be. It’s not all about getting people to run a marathon (although I’ll be doing this too!). It’s also about inspiring people to put on their own events, contacting businesses, seeing how they can support us, and getting as many people as possible to join the amazing campaigns that brainstrust put on each year. I really can’t wait to get stuck in!”
working on ways to make it bigger and more exciting than ever. It was so amazing seeing it build momentum as we got closer to October. I’m already looking forward to next year’s.” Kathryn is based in Bromley, London, on the border to Kent, and it’s the perfect place for her.
And there’s one campaign in particular which Kathryn has already had a huge part in planning: Wear Grey.
“I can travel 25 minutes and be in the buzz of central London, or do an hour in the opposite direction and be at the beach, and where I am, somewhere in the middle, is really nice and green! I’ve got all these very different places on my door step and the very different fundraising opportunities that these could create are something I want to explore”.
“Wear Grey for a Day is such a great and uniting event. I’ve been
And one part of working for brainstrust that she’s particularly
How we spend your funds: £0.46m Governance costs: £6,065
“when I have a cup of tea I feel really supported. It feels full of love and I feel very cared for by your organisation”
Cost of generating income: £54,595
Charitable activities: £400,795
If you missed out on TEAFEST this year, don’t worry, it’ll be returning again in 2016 and we’re already looking forward to it.
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Welcome K ath ryn...
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“Any excuse to have a cuppa’ and a chat is great to me. I soon hope to be attending meet ups and seeing the real difference that brainstrust’s work makes. I know this will really inspire me to get so many people fundraising so that together, as a community, we can make as much money as possible for those who need that support.”
Random facts about Kathryn n n
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Our Income: £0.42m Sponsored activities: £87,406
Partner fundraising groups: £59,683
High profile events: £82,662
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looking forward to is the chance to build strong relationships with our community.
I’m allergic to grass. I met my New Zealander husband in London, even though we lived out there for 5 years. I used to play professional rugby. I broke a record when I was 11 for winning tug of war!
Interest: £60 Personal Donations: £57,002
Grants from other charities: £80,544 Corporate support: £9,429 Gift Aid recovered: £40,765 Trading: £4,885
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Campaigning with brainstrust Let’s put the world right. The right way.
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fter 9 years of observing, and learning what works (and what doesn’t) we believe that going to the government does not work. We know what it is like to live with a terrifying brain tumour diagnosis and we place our trust in others who do too. Politicians aren’t those people.
Patients, carers, clinicians and researchers are. And that’s why the brain tumour community is and always will be the focus of our work. Together, we’ll improve the lives of brain tumour patients. And we’ve already started with the launch of The Brain Tumour Tissue Campaign, the publication of a new report “Quality of Life: What the Brain Cancer Community Needs” and a new area on our website. And what are our messages? We know that by understanding the real issues you face, we can improve your quality of life. And if quality of life is improved, so is prognosis. We also know that a brain tumour cure can’t happen until there’s a good research infrastructure, with proper patient involvement. These ideas sit behind all of our campaigning work. Get involved. Help change the world at www.brainstrust.org.uk/ policy-area.php
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Patients and professionals work together to put brain and spinal cord tumours at the top of the research agenda
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he brain tumour community recently collaborated with The James Lind Alliance in order to identify to Top 10 priorities for brain tumour research.
Brain tumour tissue is removed everyday by surgeons but very few patients know they can donate brain tumour tissue to research. A new campaign launched in February at the University of Bristol led by leading medical researchers and brainstrust will raise awareness for patients and healthcare professionals about donating brain tumour tissue and help researchers find a cure for this disease.
Usually academics and researchers decide on what should be researched, rather than the people most directly affected – those who are living with a brain or spinal cord tumour and the healthcare professionals who care for them. So JLA, brainstrust and our community worked together to change this, in order to make research more effective and patient-focused.
Save lives – be a brain tumour tissue donor
Project lead, Consultant Neurologist Dr Robin Grant said, “We are delighted to have achieved our goal of identifying the top 10 clinical research priorities in brain and spinal cord tumours, as selected by a people diagnosed with a brain or spinal cord tumour and those who care for them, whether personally or professionally. These final 10 questions cover a wide range of topics including diagnosis, treatment and support; they cover brain and spinal cord tumours, and they apply to the very young through to the over 60’s.”
recent national survey by North Bristol NHS Trust, BRAIN UK and brainstrust indicated that only 30 per cent of brain tumour patients are offered the opportunity to consent for their brain tumour tissue to be used in research. Yet a recent poll by brainstrust suggested that over 90 per cent of patients would be keen for their tissue to be used.
Top 10 uncertainties
1. Do lifestyle factors (e.g. sleep, stress, diet) influence tumour growth in people with a brain or spinal cord tumour? 2. What is the effect on prognosis of interval scanning to detect tumour recurrence, compared with scanning on symptomatic recurrence, in people with a brain tumour? 3. Does earlier diagnosis improve outcomes, compared to standard diagnosis times, in people with a brain or spinal cord tumour? 4. In second recurrence glioblastoma, what is the effect of further treatment on survival and quality of life, compared with best supportive care? 5. Does earlier referral to specialist palliative care services at diagnosis improve quality of life and survival in people with a brain or spinal cord tumour? 6. Do molecular subtyping techniques improve treatment selection, prediction and
prognostication in people with a brain or spinal cord tumour? 7. What are the long-term physical and cognitive effects of surgery and/or radiotherapy when treating people with a brain or spinal cord tumour? 8. What is the effect of interventions to help carers cope with changes that occur in people with a brain or spinal cord tumour, compared with standard care? 9. What is the effect of additional strategies for managing fatigue, compared with standard care, in people with a brain or spinal cord tumour? 10. What is the effect of extent of resection on survival in people with a suspected glioma of the brain or spinal cord? Visit www.brainstrust.org.uk/ clinical-research.php to read more about the list of the top 10 priorities for brain tumour research, which we identified together. LO G B O O K : I S S U E 7 – S E PTEMB ER 2015
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Up to sixty-thousand people in the UK are living with a brain tumour, 4,750 individuals are diagnosed with brain cancer every year and a further 4,500 are diagnosed with non-invasive tumours of the central nervous system. Yet many people are unaware that researchers do not have enough tissue to carry out their research and this is slowing down their work. By patients giving their consent, medical researchers will be able to use the donated brain tumour tissue for research into better treatments and to help find a cure for brain cancer. The new campaign will close the gap by addressing the following issues: n
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Increasing patient awareness around donating brain tumour tissue; Ensuring healthcare professionals understand the processes involved; Helping centres engage in the tissue banking network.
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positive campaign: the team driving this work is looking to support the clinical community in taking the simple steps required to improve consent rates, which will in turn help us better understand and manage this devastating disease more effectively.” Dr Suzy Lishman, President of the Royal College of Pathologists, added: “Increased tissue donation would empower patients, improve disease management and benefit future research.”
If you want to find out more, and take part in this campaign, simply visit www.brainstrust.org.uk/tissue
Last autumn a new tissue banking initiative was announced called the Brain Tumour Archive Network.
Dr Kathreena Kurian, Campaign Champion, Head of the Brain Tumour Research Group and Senior Clinical Lecturer in the School of Clinical Sciences at the University of Bristol and a member of the BRAIN UK committee, said: “This project is an excellent opportunity to let the public know how they can support medical researchers and help fight brain tumours.”
BRAIN UK, run by the University of Southampton, will link existing archives of brain tumour tissue in a virtual network so that researchers can gain access to unprecedented levels of tissue to support their much needed research into better treatments and a cure for brain cancer.
“By giving consent for tumour tissue removed at operation to be used for research the public can help researchers combat this devastating disease to benefit future generations of brain tumour patients.”
Creation of the network was led by brainstrust and supported by a wider group of brain tumour charities including Charlie’s Challenge, Brain Tumour Research and umbrella group Sophie’s Wish.
Dr Helen Bulbeck, Director of Policy and Services at brainstrust, added: “There is a fantastic opportunity here for the brain tumour patient community to drive significant improvements in brain tumour research simply by starting a conversation about tissue donation with their consultants. This is a 15
M eet Pete ...
brainstrust’s Support Specialist Pete Burchill, our Support Specialist in the North, came to brainstrust in March 2013 and his role was initially to develop a community of patients and carers around Sheffield.
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ete’s reason for wanting to work for brainstrust was, and still is, a personal one. Pete himself is a carer for his young daughter Sophie. He’s had firsthand experience of navigating the brain tumour pathway and facing the challenges along the journey. He’s seen Sophie through surgery, chemotherapy and proton beam therapy in the US and knows how frightening, isolating and confusing all of these challenges can be. At the same time, since working for brainstrust, he always knows how much you can learn from being around people in the same situation and listening to the experience of others. “That’s what’s unique about brainstrust. Everyone who is a support specialist has personal experience of brain tumours and really does know what it is like to live with one.” Pete’s role is greatly varied. Day to day he talks and provides support to patients and carers, whether over the phone, via email or in person over a coffee. And, the one-to-one nature is so important to him. “I’m amazed daily by the strength and courage that some of our community displays as it battles the challenges of a brain tumour. It’s so wonderful to see the change and shift in people from when they first contacted us, to them being empowered and truly in control and accepting of their diagnosis.” As well as this, he arranges the brainstrust Meet Ups, talks to support groups and spreads the 16
word about what brainstrust does to doctors and nurses, so that they know how to refer their patients to us. “My job is made so much easier by the fantastic resources that brainstrust offers. People I encounter are so amazed by things like the Brain Box, for one, that they want to know more and want to help shout about what we do.” And Pete too has been at the forefront of creating some of these resources himself. He recently put together brainstrust’s first regional directory of support contacts, pulling together all things patients and carers from Sheffield would need
into one place entitled The little white book. Creating this resource is one of his greatest achievements. But, it doesn’t stop there. He’s now leading another exciting development in how we deliver our support service at brainstrust. “My latest challenge is about harnessing the personal experiences of patients and carers, and training, developing and supporting them to help others on a voluntary basis. This will help us to grow our community across the North of England and make sure that more people get the help they need.”
Random fact about Pete “I’m a huge fan of real ale and, being based in Sheffield, I’m spoilt for choice with it. I think we have the best ale in the country and (when I’m not working) I go out and sample!”
Brain tumour patients offered access to their treatment records through a new online information portal
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n 2012 you, our brain tumour community, asked for access to your cancer records, information which before was difficult to access.
By working with you, Cancer Research UK, the National Cancer Registration Servicev (NCRS) and healthcare professionals we have been able to develop a portal that can be used by patients to access and engage with their records.
Why the Patient Portal is important All of our work aims to put you back in control following a diagnosis. By being able to access your records you will have more space to compute the information that your clinicians
would usually just tell you in person. You’ll be able fully to understand what’s happening at your own pace and, by having this control, you’ll be able to have better and clearer conversations with your clinical team, something you’ve told us is of utmost importance to you.
And, as we currently campaign to make quality of life a priority for everyone, we’ve ensured that the portal has a section dedicated to tracking your quality of life during stages of the condition/treatment, so that it’s high on your clinician’s agenda, alongside your own.
How the portal works:
Plans for the portal
You can access your tumour records, held by the NCRS, through a special portal. Here you’ll be able to engage with:
The portal has been in development since November 2013, and has been piloted to a number of brain tumour patients across the country, and then extended to other cancer types. The most significant finding of the pilot was that 86% of those who accessed the portal would recommend it to others.
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Tissue sample reports
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Scan reports
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Data on radio and chemotherapy
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Information about hospital attendances and treatment Links to treatment options and clinical trials
We’re now working on ways to give more patients access to the portal so that soon every patient will be able to engage with details of the condition that is changing their life. And we hope that by having access, they can feel more prepared and more in control in the face of diagnosis.
Keep visiting: www.brainstrust.org.uk/news.php to read latest news about the Patient Portal.
Pete collecting a cheque awarded to brainstrust from John Lewis’ ‘Community Matters’ scheme.
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Fundraising in memory of a loved one:
Hannah’s story I
n 2010 Hannah Richardson’s husband Alan was diagnosed with a grade 3 glioma. After a seizure and surgery soon after diagnosis, Hannah started looking for support online. That’s when she found brainstrust.
“I called Helen from brainstrust and received the most amazing amount of support. Although Alan was a really strong person, and so am I, we gained so much extra resilience through brainstrust, and were given tools to help with what we were facing. We were coached, and reached decisions on how we best wanted to spend time together. And, most importantly, we were supported with having conversations about end of life, which, when Alan’s journey did end, made it much easier for me as I knew Alan’s wishes were met. Without brainstrust I would have been completely frozen in that situation.”
I’d set up a Justgiving page and, on there, people there were not only donating to a cause close to us, but also leaving their condolences and wonderful messages of support to me, which I understood would have been difficult in person. It was a really cathartic and powerful experience, having this channel where we could speak of Alan. And, even though Alan’s funeral was on Christmas Eve, in the most appalling weather, so many people came, including Helen and Peter from brainstrust, and ultimately it ended up being an incredible celebration of his life.” Hannah had already begun to fundraise for brainstrust whilst she and Alan were being supported. She
Hannah, who is a fundraiser by trade, knew she wanted to give something back to brainstrust. She’d decided that after Alan had passed away, she didn’t want billions of flowers, and instead asked for donations in lieu of these. “It was a way of doing something positive at Alan’s funeral. It not only helped me, but also everyone else who I encountered after his death.
Hannah with her Dad and husband Alan
ran the Royal Parks Half Marathon for brainstrust, with him cheering at the side. After he had passed away, she decided to run the marathon again in his memory. The race gave her something positive to focus on and she not only raised lots of money in sponsorship again, but also fulfilled a personal goal of improving her running time. In addition to this, she also ran the Southbourne 5K. And it’s not only Hannah who’s been committed to raising funds in memorium. “I’ve found it really amazing what people have done, to rally around and help me give back to brainstrust. Alan’s cousin, for example, is currently training for an overnight 100K walk. A colleague of mine held a 2 week cake and bake sale, and other told me she’d sent in a cheque. So many people have given their time, energy and money, and that’s just been incredible.” If you’d like to raise funds for brainstrust in memory of a loved one, we’ll support you with it every step of the way. Simply contact tessa@brainstrust.org.uk
Another family that we support did something incredible for brainstrust in memory of their beloved Ruth. Read about the colour run in Ruth’s memory at http://www. brainstrust.org.uk/news.php 18
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Shavepril A
ll throughout April, Antony Evans and Ian Phillips, two of our incredible supporters, asked people to shave, donate and nominate for brain tumour support. Five years ago Ian was diagnosed with a brain tumour and we’ve been supporting him since. The two not only wanted drum up some funds for brainstrust so that we could support more people, but also wanted to communicate more awareness of the traumatic affect that cancer has on its sufferers through a sympathetic campaign.
“We believe ‘Movember’ has maybe run its course, and promoting growing hair, which never actually happens in the treatment of cancer to our knowledge, is just a bit odd. We’re not aware of patient’s symptoms, of any disease, feeling like they’ve had a bucket of iced water poured on their heads either! We believe this is a far more empathetic and compassionate way of communicating the issues of chemotherapy treatment surrounding the condition that is cancer, a disease that Ian continues to battle bravely.” Antony Evans, Shavepril organiser Antony and Ian were the first to take the brave shaving step and many incredible others followed their lead. These were people who took their nominations seriously and got sponsored to shave, as well as others who, like Ian, had been affected by brain cancer and knew how much support is needed after diagnosis. LO GB O OK: ISSU E 7 – SEPTEMB ER 2015
It was the latter than inspired ‘the first lady of Shavepril’, Charlotte Ferris, who decided to shave in memory of her auntie whom passed away from a brain tumour and mother in law who she lost to cancer. Charlotte’s shave alone raised £2000 for brainstrust, and inspired another brave lady to follow. Shortly after, Nicky Murrell joined the campaign and shaved in memory of the mother she lost to a brain tumour, reminding others why it was so important to get involved.
Charlotte Ferris
Nicky Murrell
It was incredible to watch the campaign grow throughout the month, and see so many people do something huge for brain tumour support. Thank you so much to Antony and Ian for creating Shavepril, and to everyone who shaved, donated and nominated. Together, you raised over £7000 for brain tumour support, funds that will go towards building our resources and support service so that we can help reach more people across the UK living with and beyond a terrifying brain tumour diagnosis. Visit www.facebook.com/ Shavepril2015 to see all of the images from the campaign.
“Looking back, I remember being stunned that there seemed to be nothing that could be done other than to make her final months more comfortable… I remember feeling as though we left to get on with things – I know we weren’t entirely: the doctors and nurses and the various hospitals and clinics were incredibly caring and compassionate but we so needed someone to lean on, someone to ask those tricky questions of – what is going to be like? brainstrust now offers this and SO much more – it offers hope. I have chosen to do this now because it is right for me now. I am ready to make a stand, to be noticed and make people notice brainstrust and brain cancer” Nicky Murrell 19
Patient Story:
Sarah Andrews Patient Sarah Andrews shares her brain tumour story.
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arah is living with an Oligodendroglioma in her right occipital lobe, a giloma, slow-growing tumour which attacks the fatty coating of the dendrocytes (which pass electrical impulses through the brain). Although Sarah had lived with the tumour for years before diagnosis, it didn’t affect her until the 4th November 2010, when she experienced “pain like a hot metal spike being driven through the brain”. Following this, she had issues with peripheral sight in her left eye and, after numerous trips to the GP and eye hospital, was eventually referred to a neurologist. At first it was believed that Sarah had suffered from a chronic migraine, but the neurologist gave her an MRI scan, initially ‘to put her mind at rest’. Sarah’s tumour was then discovered: a cancerous giloma the size of a golf ball. The tumour is inoperable due to the damage that would be caused. Following on from the diagnosis on January 2012 Sarah had a biopsy in the same month and then a course of radiotherapy which finished on 19th April 2012, leaving things stable since. “My ‘life’ stopped the day I was diagnosed. I was a psychotherapeutic counsellor and cleaner, but had to surrender my driving licence on day of diagnosis. I do not know the date I found brainstrust, I only know it was in the middle of the night, about 3am, and I was in a state. I found the number, rang, left a message and Helen called me back, straight away. I was amazed that someone could care (she had been in bed, asleep) and I think she said “but you needed me now” and since then that is the only thing I have ever felt from this fantastic charity… love, support, friendship and care and they ask for nothing in return.” Sarah has found much comfort in brainstrust’s Facebook support page, which allows her to feel ‘normal’ by talking with others who have the same issues. She’s also known within the group for providing invaluable support to others who are on the same journey. “We share good/bad/sad news and support each other as best we can. It is a family and a community, and yes that means we disagree sometimes, but it means we are real and at the end of it we are there for each other.” 20
Upcoming events Date and time
Event
Location
1 October 1 October
Wear Grey for a Day
Nationwide Manchester
Meet Up on Wear Grey for a Day
5–9 October
23rd Cochrane Colloquium
Vienna
11 October
Royal Parks Half Marathon Contact Kathryn for more information, closing date for entry 21st August, minimum sponsor is £300 for a charity place
London
15 October
Meet Up
Edinburgh
20 October
Meet Up
Bedford
25 –27 October
IBTA Summit on brain tumours
Spain
1– 4 November NCRI Annual Conference
Liverpool
9 November 9 November
Inverness Sheffield
SANON National Meeting Meet Up at the Hollywood Bowl
10 November
Meet Up
Birmingham
18 –22 November 23 November
Society of Neuro-Oncology Annual Conference
Texas
Meet Up
Glasgow
26 November
Allegri Misevere by Candlelight Concert Tickets £14 from Kathryn with half of ticket sales going to brainstrust
St Martin-inthe-Fields, London
9.30pm to 10.30pm 8 December
Santa Run 10k – very family Victoria Park, friendly! Contact Kathryn London for more information, minimum sponsor of £100 required
Key Meet Up
Conferences
Patient Info Day
Event Days
Grant income
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n the last financial year, we have been fortunate enough to have increased levels of grant income, receiving a total of £80,554 from other charities that believe in brain tumour support like we do.
We would like to use this space to thank the Rank Foundation, Macmillan Cancer Support, the May Hearnshaw Trust, the National Lottery, the Wyseliot Charitable Trust, the Foundation for Children and the Monica Rabagliati Charitable Trust for their continued support. Without the help that we receive from these organisations many of our projects would not have been possible.
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