Annual Review 2013-2014
Going the distance
The bone & soft tissue cancer charity
We provided support and information for 14,000 people via our sarcoma.org.uk/help webpage
We saw an overall increase of media coverage by 70% We entered into a partnership with The Boom Foundation in Northern Ireland We supported Richard Whitehead Runs Britain from John O’Groats to Land End The bone & soft tissue cancer charity
We developed our six year strategy Transforming the landscape for sarcoma
40% more people heard about us through our charity leaflet
We launched our research grant call of £250,000
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Our mission To increase knowledge and awareness of sarcoma through ground-breaking programmes that inspire involvement and transform the landscape for everyone affected by sarcoma.
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What we do
What is sarcoma?
We raise sarcoma awareness to initiate change and improve standards of treatment and care.
Sarcomas are rare cancers that develop in the muscle, bone, nerves, cartilage, tendons, blood vessels and the fatty and fibrous tissues.
About Sarcom
We seek answers through research. We provide support & information for the sarcoma community.
Sarcomas fall into three broad categories: Soft tissue cancers Primary bone cancers Gastro-intestinal stromal tumours (a type of soft tissue sarcoma found in the stomach and intestines commonly known as GIST)
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There are around 100 different sub-types of sarcoma. About 3,800 new cases of sarcoma are diagnosed each year in the UK which makes up approximately 1% of all cancer diagnoses.
The current sarcoma landscape 10 people every day are diagnosed with sarcoma in the UK. Sarcomas make up 15% of all childhood cancers (0-14 years). Sarcomas make up 11% of all cancer diagnoses in teenagers and young people (15-24 years).
sarcoma.org.uk About Sarcoma UK DL.indd 2
Your fundraising led to a 74% increase in income –
our biggest ever!
11/12/2014 11:42
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A personal message This year has been one of huge development for Sarcoma UK, bringing increased recognition of our vital role as the only charity in the UK focusing on all types of sarcoma. This first year of our new six-year strategy – Transforming the landscape for sarcoma (launched in January 2014) - sets a benchmark for the future. Our income increased by 74% from £438,463 to £760,967 which means we can put in place the building blocks needed to deliver our ambitious goals. We are so grateful to all our supporters for helping to make this happen. Sarcoma UK is a truly national charity. This year, more people have contacted us for support and information from all corners of the UK. We have extended our reach by establishing special partnerships in Northern Ireland, Scotland and Wales with support organisations, people affected by sarcoma, and sarcoma health service providers. Our Patron, Richard Whitehead’s awe-inspiring 40 marathons in 40 days challenge raised sarcoma awareness from John O’Groats to Land’s End, bringing people out onto the streets in support and resulting in media coverage far beyond anything a charity of our size can usually hope for. We are extremely grateful to all our supporters for their commitment to Sarcoma UK. The increase in donations in a tough economic climate is testimony
to the personal and sometimes devastating impact sarcoma has on families and friends. Sarcoma UK will use these funds to secure and build our services for people diagnosed with sarcoma and their families. We believe that greater awareness of sarcoma leads to more effective treatment, so we will invest more in promoting the experiences of people affected by sarcoma to national policymakers, healthcare professionals and NHS sarcoma service providers. Very importantly, there will also be significant investment into Sarcoma UK’s research programme in 2014/15 to understand more about sarcoma, try to find new treatments and ultimately to identify a cure. There is much to do. While we have experienced a significant increase in funds this year, we are a small charity with a big job to do. Sarcoma patients still face late diagnosis, limited treatment options, fear of what the future brings, and isolation that comes with a diagnosis of a rare cancer that few people have heard of. Please help us transform the landscape for sarcoma by continuing to support us in any way you can. Lindsey Bennister Chief Executive Peter Jay Chair of Trustees
Our board of trustees 2013-14
Back (left to right) Glyn Wilmshurst, Ian Hughes, Sharon Reid, Prof. Rob Grimer, Peter Jay (Chairman), Nicky Mellows, Lesley Abraham Front (left to right): Dr Jeff White , Lindsey Bennister, Helen Stradling, Karen Delin, Dr Jane Barrett, Sam Whittam, Leigh Hibberdine
Thanks so much for coming along and running with me and for all your fundraising so far. Sarcoma UK and Scope are two charities close to my heart and all the money you have raised and continue to raise will really make a difference. Thank you. Richard Whitehead MBE, Sarcoma UK’s Patron
Sarcoma UK is the only charity in the UK focusing on all types of sarcoma Our mission is to increase knowledge and awareness of sarcoma through ground-breaking programmes that inspire involvement and transform the landscape for everyone affected by sarcoma. • We raise sarcoma awareness to initiate change and improve standards of treatment and care • We seek answers through research • We provide support & information for the sarcoma community
Histology slides from the Institute of Cancer Research diagnostic lab.
What is sarcoma? Sarcomas are rare cancers that develop in the muscle, bone, nerves, cartilage, tendons, blood vessels and the fatty and fibrous tissues. There are around 100 different sub-types of sarcoma.
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I view this as a huge personal challenge, an opportunity to raise funds and awareness of sarcoma. Lindsey Evans (Team Talbot, GB) Sailed in the Lindsay Evans (Team Talbot, GB, TheWorld Clipper World SeptemberUK 2013) Clipper YachtYacht RaceRace for–Sarcoma
(September 2013)
The current sarcoma landscape •
About 3,800 new cases of sarcoma are diagnosed each year in the UK. These represent approximately 1% of all cancer diagnoses – 3,330 people are diagnosed with a soft tissue sarcoma (including GIST) – 500 people are diagnosed with a bone sarcoma
•
In general, patients with a bone or soft tissue sarcoma diagnosis tend to be younger than the majority of cancer patients – 16% of bone or soft tissue sarcomas are diagnosed in patients less than thirty years of age, compared to around 2% of all cancers* – 37% of bone or soft tissue sarcoma patients are aged less than 50 years* – Sarcomas make up 15% of all childhood cancers (0-14 years) – Sarcomas make up 11% of all cancer diagnoses in teenagers and young people (15-24 years)
* England data. Statistics from the West Midlands Knowledge & Intelligence Team (Public Health England)
Fernwood Foxes Football Club fundraise in memory
The Will Carling Memorial Cup is a series of events that represent the sports that Will was of theirand Co-Founder Scott Whittaker. passionate about: golf, basketball now rugby too! Danny Atkins (The Will Carling Memorial Cup – August 2013)
Our goals 1. More people will survive sarcoma. 2. More will be known about the causes of sarcoma. 3. Everyone affected by sarcoma will have access to the best treatment and care. .
I want to raise money and awareness of this terrible disease. That’s why I took on Tough Mudder. Michael Morgan (Tough Mudder – September 2013)
From 1 April 2013 – 31 March 2014 we…
The encounters with other sarcoma patients along Richard’s run made me feel more optimistic about life and less alone. Especially my surprise 33rd birthday party thrown for me! Six months ago my future seemed uncertain, so birthdays and getting older are definitely something to celebrate now. Claire McIntyre (Richard Whitehead Runs Britain – September 2013)
...raised awareness • Supported our Patron during ‘Richard Whitehead Runs Britain’. Richard completed 40 marathons in 40 days, from John O’Groats to Land’s End • Evaluated our GP Awareness pilot project (run in 2012/13) with the Royal Orthopaedic Hospital, Birmingham
During RWRB, Sarcoma UK was mentioned in national and local media; BBC Breakfast; Channel 4 News; Channel 5 News; Sky Sports; Radio 2 Chris Evans Show; The Times; The Sunday Times; The Last Leg.
The bone & soft tissue cancer charity
The Big Conversation
Four excellent speakers and workshops and such collaborative enthusiasm. Mike Francis The Studio, Birmingham, March 2014
An event of truly inspiring people. Michael Maguire
...hosted The Big Conversation Learn • Understand • Discover • Explore • Discuss • Meet In March 2014, Sarcoma UK held the first event for the Sarcoma Voices network. The event consisted of a day of workshops, speakers and discussion to strengthen 70 patients, carers, relatives and support group leaders in their role as patient advocates. During this year, Sarcoma Voices were represented widely in groups and workshops, including • • • •
NHS England Sarcoma Clinical Reference Group National Cancer Research Institute Sarcoma Clinical Studies Group National Cancer Intelligence Network Sarcoma Site Specific Clinical Reference Group National Institute for Health and Care Excellence (NICE) Sarcoma Quality Standard expert group • GSK workshop examining data from the 2011/12 National Cancer Patient Experience Survey for sarcoma and renal cancers, leading to a report and recommendations for improving patient experiences Sarcoma Voices and patient experiences informed Sarcoma UK’s many policy responses during 2013/14, including submissions relating to GIST made to NICE and to the All Wales Medicines Strategy Group.
Great community of researchers, clinicians, patients, carers and supporters. Derek Stewart
The Boom Foundation held our first bi-annual Gala Ball. It was an incredible night, with over 300 guests. The Titanic Belfast’s famous ballroom set the scene for a night of glamour complete with a jazz quartet. Leona Rankin – far left (The Boom Foundation – November 2013)
...developed partnerships throughout the UK Scotland
• Awarded two new research grants in Aberdeen and Edinburgh • Recruited a new trustee, Dr Jeff White, oncologist at the Beatson Cancer Centre • Registered as a charity in Scotland
Northern Ireland
• Entered into a strong partnership with the Boom Foundation, a new charity set up to provide support to sarcoma patients and families across Northern Ireland. The Boom Foundation have pledged to give 50% of their funds raised to Sarcoma UK, specifically to fund research. • Supported a Living Well with Sarcoma event in Antrim attended by almost 100 patients, families and sarcoma healthcare professionals
Wales
• Started to build our supporter base in Wales
The Boom Foundation have donated over £25,000 to Sarcoma UK this year.
We hope to find a small number of ‘hits’ that will stop the tumours growing, and this will lead to clinical trials where drugs related to the successful compounds could be used in the treatment of chordoma patients. Professor Adrienne Flanagan, New therapeutic agents for chordoma, University College London Cancer Institute
...expanded our research program • Launched a call for high quality, peer reviewed research, increasing our annual award from £100,000 to £250,000 • Expanded our Research Advisory Committee to include two new members: Professor Adrienne Flanagan MB PhD FRCPath FMedSci, and Dr James Spicer MA FRCP PhD
We continued to fund
• Dr Janet Shipley, Institute of Cancer Research, “Genomic and expression profiling of well differentiated and dedifferentiated liposarcomas and recurrences” • Professor Nick Athanasou, University of Oxford, “Analysis of osteolysis in Ewing’s Sarcoma and the effect of resorption inhibitors on tumour growth” • Dr Henning Wackerhage, University of Aberdeen, “TAZ & rhabdomyosarcoma: TAZ expression in human samples, TAZ transformation of myoblasts and YAP/TAZ drug discovery” • Professor Ted Hupp, University of Edinburgh, “Validation of clinically relevant oncogenic receptors in high grade human sarcoma as potential drug targets” • Professor Adrienne Flanagan, University College London, “New therapeutic agents for chordoma”
Research funded by Sarcoma UK was presented at academic events and conferences including the BSG and the European Cancer Congress.
Being diagnosed with a sarcoma can be isolating due to the rarity of this type of cancer. Joining the London Sarcoma Group meant I was able to talk to others who understood the feeling of isolation and we are all no longer alone. Anna Wallace, patient and support group member
...provided support & information to the sarcoma community • Expanded the distribution of our information materials through a new partnership with Maggie’s Cancer Centres • Launched new booklet, Understanding GIST: Gastrointestinal Stromal Tumours, and distributed to sarcoma specialist centres across the UK • Collected the experiences of women with gynaecological sarcoma through a national survey • Expanded the network of regional and online support groups • Achieved Information Standard accreditation for two titles – Understanding sarcoma: a new patient’s guide – Rehabilitation for sarcoma patients. This title was produced as part of a new collaboration with the NHS Quality Improvement Development and Innovation Scheme (QIDIS).
We distributed 800 copies of Understanding sarcoma: a new patient’s guide.
Employees at Three have the chance to apply for the Charity Challenge, a scheme that matches employee fundraising pound for pound. we took on three challenges: a 10K run, a national bake-off, and a sponsored ‘Wear your Christmas Jumper Day’. Catherine Burls
...built a strong charity • Developed our first comprehensive fundraising strategy, diversifying into new areas • Established a new personal service to supporters, helping them to maximise their fundraising • Improved and developed our range of fundraising materials • Increased our visibility at the London Marathon, with £52,907 raised by our runners • Selected as Charity of the Year by staff at Three (mobile network) and Women on the Move Against Cancer (volunteer group operating in the automotive industry)
4,473
followed us on social media
89%
increase in users of our website
We found ourselves at the footsteps of the Great Wall of China revving the engine of our late father’s pride and joy, a 1927 Vintage Bentley, about to embark on the journey of a lifetime. Daniel and Antony Woodcock (Peking to Paris Vintage Rally – May 2013)
Spreading our word of thanks… We recognise that our supporters are very committed and unique in their fundraising efforts. Without your fantastic support, we would not be able to do the work we do. Deepest thanks to
Roger Wilson CBE (Honorary President) Richard Whitehead MBE (Patron) Prof. Ian Judson (Scientific/Medical Advisor)
And our volunteers far and wide
Glenys Stittle, our office volunteer, for her dedication and support on a weekly basis; Alice Jackson for her volunteering work; Scott Temple for his work on Connect; Sarcoma UK’s Research Advisory Committee; sarcoma support group leaders; managers of online support services; Sarcoma UK’s Information Review Panel; the speakers at the Sarcoma Voices Big Conversation event; individuals and families who have provided their stories for use as case studies; everyone who has undertaken fundraising & awareness raising in their communities; and everyone who has set up information stands and cheering stations at events and challenges.
Accounts For every £1 spent on fundraising, £6.22 was raised. Income Our financial year runs from April 2013 to March 2014.
Donated services £64,100
Investment income £2,735 Grants £10,000
Thanks to you, we have grown income significantly from £438,463 to £760,967, an increase of 74%. Voluntary income from individuals and families who have a personal connection with sarcoma represents almost 90% of Sarcoma UK’s funding. This large percentage demonstrates how vital your fundraising is in supporting our work. Donations & sponsorship (including Gift Aid) £684,132
Expenditure Our expenditure for the year increased by 11% to £485,570. This amount reflects our expanded activity and success in achieving our charitable objectives. No research grants were awarded during this financial year. However, £250,000 has been designated towards research grants in 2014/15, more than double the amount awarded in previous years.
Information & support £116,588
Awareness & education £171,972
Cost of generating voluntary income £121,843
Research £56,029 Governance £19,138
The summary financial information shows the income and expenditure for our charity. The information is taken from the full accounts which were approved by the trustees on 23 October 2014. In order to gain a full understanding of the financial affairs of the charity, the full annual accounts, including the trustees’ report and auditor’s report should be consulted. Copies can be obtained from Sarcoma UK. Signed on behalf of the trustees Peter Jay, Chair
020 7250 8271 info@sarcoma.org.uk @Sarcoma_UK uk.sarcoma 49-51 East Road, London N1 6AH Registered as a charity in England and Wales (1139869) and in Scotland (SC044260) A company limited by guarantee in England and Wales (7487432)
Design and print: INQ Design Ltd • www.inqdesign.co.uk • Tel: 020 7737 5775
sarcoma.org.uk