A Horam family who founded and now run a successful medical fundraising charity attended an event hosted by Brain Tumour Research and the All-Party Parliamentary Group for brain tumours last month.
Charlie Boutwood and his dad Nigel, from Charlie’s Challenge, went to the meeting held to mark brain tumour awareness month. The session also revealed findngs on a new report on the funding for brain tum0ur research.
Charlie, Nigel, Wealden MP Charles Hendry and all the other guests wore hats to promote Wear a Hat Day on March 28, the charity’s annual awareness raising campaign.
The report by New Philanthropy Capital (NPC), commissioned by Brain Tumour Research, found that brain tumours (which kill more children and adults under 40 than any other cancer) have one of the lowest survival rates across all cancers - and one of the lowest levels of funding.
Brain Tumour Research is calling for five times as much funding for research into brain tumours by 2020.
The report found that brain tumours have one of the lowest survival rates amongst all cancers, with just 18.8% of individuals surviving for more than five years.
The research highlights that mortality rates are increasing, with 16 per cent more deaths recorded in 2011 than in 2001.
The average years of life lost for brain tumours stands at 20.1 years, compared to the average across all cancers of 12.5 years.
The report further shows that cancer research funding is significantly skewed, with just five site specific cancers: breast cancer, leukaemia, colon and rectal cancer, prostate cancer and ovarian cancer receiving 60 per cent of all funding, leaving the remaining 40 per cent spread out across 43 remaining site specific cancers.
Nigel Boutwood, trustee of Charlie’s Challenge, said: “NPC’s research reinforces what we have felt for some time, that brain tumour research needs more funding if survival rates are going to increase in line with other cancers.
“Wear A Hat Day on March 28 provided an opportunity to raise funds and awareness of this devastating disease. I also urge everyone to sign the e-petition http://epetitions.direct.gov.uk/petitions/35167”
The charity was set up in 1993 after Charlie, 20 months, was diagnosed with a malignant brain tumour.
An emergency eight-hour operation was only able to remove three-quarters of it and he endured a year of intense chemotherapy followed by six weeks of radiotherapy. Against the odds he has made a remarkable recovery.