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.”
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.