Being part of SUCCESS is such a privilege. We know that already we are making a difference to the lives of childhood brain tumour survivors, and SUCCESS is only just starting! TANYA BASS CHILDHOOD BRAIN TUMOUR SURVIVOR
WELCOME Welcome, and thank you for attending SUCCESS’s first Charity Ball, an event we hope will become an annual tradition for the charity and will help to enable us to put on our Survivor’s Conferences, the first of which is happening later this year. Here is a little information about us, what we do, and what the charity hopes to achieve:
What is SUCCESS? SUCCESS is a charitable fund created specifically to enable brighter futures for childhood brain tumour survivors across both Great Ormond Street Hospital and University College London Hospital.
Why is SUCCESS important? Every year 400 children are diagnosed with a brain tumour. The five year survival rate across all childhood brain tumours is 75%. Whilst this is a high rate, it does mean that more and more children, with disease that is worse and harder to cure, are living longer and longer – almost always at a cost from more intensive surgical and oncological therapies: this first and increasingly larger cohort of survivors suffer a multitude of life-altering complications including
a) hormonal consequences - severe obesity and secondary diabetes, life threatening deficits in salt/water balance, impaired stress response, abnormal sexual maturation and/or infertility, delayed growth, premature death from secondary complications; b) neuro-disability from motor and sensory deficits causing paralysis, deafness and blindness and c) cognitive impairment causing learning and/or emotional disorders whose lack of post cure rehabilitation aggravates the problem.
Dr Spoudeas, founder of SUCCESS, says:
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Not enough is being done to help these young adults. The fund exists to address current survivors’ needs arising from these life-changing complications as well seeking to improve the quality of life of future survivors through longer-term clinical projects.
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The young brain is adaptable, constantly developing and maturing until the age of 25. Many youngest children do not overtly manifest their injury until many years have passed and their best opportunity for rehabilitation has been lost. SUCCESS aims to optimise screening, surveillance and treatment programs to change this and to change the perception that the job is complete once cure has been attained. In fact it has only just begun.
How does SUCCESS achieve this? SUCCESS has two core objectives: a) to support survivors and their families in order to improve their quality of life and help ease the transition through important developmental milestones; and b) to research and fund clinical-related projects to seek a deeper understanding of (unrecognised yet treatable) neuro-endocrine consequences of brain tumours and cancer related therapies. SUCCESS aims to meet these objectives by investing in clearly defined priorities, driven by survivors’ needs, and set out in a detailed strategy roadmap which can be found on its website: www.successcharity.org.
What projects is SUCCESS seeking to raise funds for? There are a number of ongoing, recurring projects that SUCCESS is committed to raise funds for – below are some examples: Annual Survivors’ National Conference: 2017 will see the launch of SUCCESS first conference for survivors, by survivors, to survivors. This will be the first community get together to share experiences and successes as well as work towards a brighter future for young patients treated for brain tumours at GOSH and UCLH. SUCCESS is aiming to make this an annual event. PhD funding: SUCCESS aims to provide matched funding for rolling 3-year PhD programmes for postgraduate medics in this field at UCL and ICH to improve the care and quality of
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life for children through supporting much needed high quality clinical research, educating young professionals in this field and disseminating best practice internationally. Periodic Survivor clinics: Survivors clinics offer emotional and practical support to young adults and their families affected by a brain tumour. They are an opportunity to connect with others and share best practice in and around surviving brain tumours and dealing with complications arising as a result of the diagnosis and related treatments. Resources: SUCCESS develops and shares educational and informational material relating specifically to childhood brain tumour survivors to help survivors and their loved one. This material ranges from Blogs of patients sharing their stories with others on our Community webpage, to targeted informational factsheets about brain tumours, their treatment and managing their side effects and how to manage these. Clinical audit and research: Decades of research on long-term outcomes for survivors is being continually evaluated to formulate and develop best practice guidelines to mitigate and reduce latent long-term side effects arising from brain tumours and their treatments. Advocacy: Raising awareness amongst survivors, oncologists and educationalists of the long-term needs beyond cure. This is achieved by educating staff and patients, training patient ambassadors and providing information via the Web and leaflets.
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Tish Leibovitch was established in 1991 and is a firm of Accountants based in Ilford offering accounts, taxation and business advisory and support services to a wide range of businesses and individuals. The firm provides a cost-effective, high value solution to meet all of your financial needs. Please contact us on: 020 8709 6000 Web: www.tishleibovitch.co.uk
I am so excited about SUCCESS and what it is going to achieve. I was thrilled to be appointed a Patient Ambassador, representing the voice of the childhood brain tumour survivors, and have enjoyed directly influencing the future direction of SUCCESS. REBECCA MANN CHILDHOOD BRAIN TUMOUR SURVIVOR
SUCCESS has achieved so much already, but there is a real sense of excitement amongst our community about the huge possibilities ahead for childhood brain tumour survivors. I don’t know of any charities like SUCCESS and it’s great to be part of it! DORON BARSAM CHILDHOOD BRAIN TUMOUR SURVIVOR
www.successcharity.org | www.justgiving.com/uclh-success fb: @successuclhnhsuk RCN: 229771