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SUCCESS Fund

SUCCESS was created to enable brighter futures for childhood brain tumour survivors from Great Ormond Street Hospital and UCLH.

Annabel Higgins, 12, was first diagnosed with a low grade astrocytoma in the brain when she was just 6 years old, after experiencing a long period of unexplained poor growth.
Annabel Higgins, 12, was first diagnosed with a low grade astrocytoma in the brain when she was just 6 years old, after experiencing a long period of unexplained poor growth.

Why is SUCCESS important?

Every year 400 children are diagnosed with a brain tumour and 75% of them are deemed cured 5 years later. This population of patients are living longer thanks to more intensive surgical and oncological therapies – but this almost always comes at a significant price, which becomes more evident with time.

Since 2000, we have the first and largest expanding survivor cohort nationally, and recognise they suffer many life-altering complications:

a) Hormone disturbance – deficits in growth and sexual development, severe obesity and secondary diabetes, and premature death from  life threatening salt/water and stress hormone deficits.

b) Neuro-disability - motor and sensory deficits causing paralysis, deafness and blindness.

c) Cognitive impairment - causing learning and/or emotional disorders whose lack of post cure rehabilitation aggravates the problem.

Dr Spoudeas, founder of SUCCESS, says, “Not enough is being done to help these young people recover from their cumulative brain injury. The fund exists to address the unmet needs of current survivors and to improve the quality of life of future survivors through longer-term prevention and remediation clinical projects.”

How does SUCCESS achieve this?

The young brain is adaptable, constantly developing and maturing until the age of 25. Many young 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 programmes to change this.

SUCCESS has two core objectives - to support survivors and their families transition through important developmental milestones and to fund clinical research projects which seek a deeper understanding of (unrecognised yet treatable) neuro-endocrine consequences of brain tumours and cancer related therapies.

Annabelle is now doing exceptionally well after a recurrence needing further surgery and radiation two years ago, and is demonstrating continuing catch up growth towards her target potential.
Annabelle is now doing exceptionally well after a recurrence needing further surgery and radiation two years ago, and is demonstrating continuing catch up growth towards her target potential.

The kind of projects we fund

  • A survivors’ national conference: 2017 will see SUCCESS launch its first conference for survivors, by survivors, to survivors - a community get together to share experiences and successes, which are backed by a series of workshops 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 research funding at UCL: to provide matched funding for rolling 3-year PhD interdisciplinary neuroendocrine programmes for postgraduate medics in this speciality at ICH/UCL, enhancing education and disseminating best practice internationally.
  • Interdisciplinary periodic age appropriate survivor clinics: these offer emotional and practical support to young adults and their families affected by a brain tumour and one-stop needs assessment of brain injury. 
  • Resources: To develop and share educational and informational material specific to survivors of childhood brain tumours to assist them and their loved ones. 
  • 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 after treatment for a childhood brain tumour.
  • Advocacy: Raising awareness amongst survivors, educationalists, oncologists, endocrinologists and the wider multidisciplinary rehabilitation professionals of the long-term needs beyond cure. 

Read more about the work