(Left to right) Kevin, Christopher and Karen Capel.
Prime Minister Theresa May has celebrated the devoted fundraising of Karen and Kevin Capel, who set up Christopher’s Smile in memory of their son who died of a brain tumour.
Kevin and Karen founded their charity in October 2008 – Christopher was just five years old when he died in June of the same year. He was diagnosed with a type of brain tumour called medulloblastoma almost two years before they set up the charity in his memory.
They wanted to find something positive in their tragedy and felt strongly that new treatments were urgently needed for many children who do not survive their disease and those who survive but face a lifetime of post-treatment issues.
Christopher’s Smile has now raised more than £1 million for childhood cancer research, including funding for four full-time researchers here at the ICR.
Supporting a genetic test for children
Their support has led to a pilot study of a new genetic test to help personalise children’s cancer treatment. The study is the first stage of what is hoped will be a wider programme of testing that will help direct children onto clinical trials of treatments that directly target genetic mutations within their tumours.
Professor Louis Chesler, Professor of Paediatric Cancer Biology at the ICR and Consultant at The Royal Marsden NHS Foundation Trust, talks about a new pilot study that will sequence 81 cancer genes in children’s tumours to help personalise cancer treatment in March 2016.
In recognition of the impacts they are making, Karen and Kevin Capel were chosen for a Points of Light Award, which recognises outstanding individual volunteers, who are making a change in their community.
The Point of Light Award presented to Kevin and Karen Chapel of Christophers Smile and a letter from Prime Minister Theresa May (click to enlarge).
Making a real difference
On receiving the award, they said: “We are delighted to receive a Points of Light award in recognition of our efforts to help to make a positive difference to the lives of children with cancer, in terms of finding new treatments so they not only survive the disease but reach adulthood enjoying a good quality of life.”
In a personal letter written to Kevin and Karen, Prime Minister May wrote: “Your important work with Christopher’s Smile is a wonderful tribute to Christopher’s memory and is supporting breakthrough research that will make a real difference to children diagnosed with brain cancers.”
Campaigning for change
As well as funding developments in children’s cancer treatment, the Capels are actively campaigning for children to have better access to innovative new treatments. Kevin and Karen recently submitted a response to the European Commission’s consultation on the Paediatric Regulation, and contributed to the submission by the Unite2Cure coalition.
Like the ICR, they want to close the existing loophole in the legislation that allows pharmaceutical companies to avoid trialling a new treatment in children, even when there is evidence that it could be beneficial.
Kevin and Karen are determined to do all they can for children with cancer: "Our vision is for every child diagnosed with childhood cancer not only to survive, but to reach adulthood enjoying a good quality of life. We are proud of our achievements so far, particularly working alongside the ICR to develop safer treatment options for children, but we want to make an even bigger difference."
Find out why we are asking the European Commission to reform childhood cancer trials regulation.