A young man from Horam who overcame a childhood brain tumour is calling on the Government to invest more in finding a cure for the devastating disease.
Charlie Boutwood, 23, was among many patients and their families, carers, scientists and charities who presented a new manifesto from the national charity Brain Tumour Research to MPs, including Shadow Chancellor Ed Balls, at a Westminster reception.
It took place on Tuesday at Speaker’s House, the residence of Commons Speaker and patron of Brain Tumour Research, the Rt Hon John Bercow MP.
A former pupil at Shiplake College and a graduate and working as a media sales executive at City AM, Charlie was among those who described how a family is affected by a brain tumour diagnosis.
He said: “I have defied the odds and exceeded expectations. I am a living inspiration of what can happen and while my story is a celebration of life and hope, many others are not so fortunate.”
Charlie was 20 months old when he underwent emergency surgery to remove a Medullablastoma brain tumour. This was followed by a year of intensive chemotherapy and six weeks of radiotherapy. Remarkably, he made a full recovery.
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With him at the event was his father Nigel, who set up Charlie’s Challenge, a member charity of Brain Tumour Research which campaigns to increase awareness and has raised hundreds of thousands of pounds for research.
The Invest In A Cure manifesto is an open invitation and call to action inviting the UK Government to work with Brain Tumour Research and partner organisations, focus on research funding, incentivise and prioritise treatment for brain tumour patients and promote innovation with a dedicated fund for brain tumour research.
Nigel, a Brain Tumour Research trustee, said: “We are a lucky family and I look forward to a time when more are as fortunate. It’s vital we continue to press for Government support. Brain tumours kill more children and adults under the age of 40 than any other cancer yet just one per cent of the national spend goes to this devastating disease. This is unacceptable.”
Sue Farrington Smith, chief executive of Brain Tumour Research, said: “We’ve a set of recommendations for MPs that represent the voice of members and supporters. We want to fund seven dedicated research centres while challenging the Government and cancer charities to invest more in research. We call on them to help us fund the fight. Together we’ll find a cure.”