Children’s cancer charity launches unique funding programme

A national childhood cancer charity is launching a new funding programme for research into rare and under-funded cancers affecting children – including the UK’s only dedicated fund to support research into the health of cancer survivors.

CCLG (Children’s Cancer and Leukaemia Group), based at the University of Leicester, is launching the Research Fund Programme, which will allow families and members of the public to support research into specific aspects of childhood cancer, with the benefit of fundraising support and expertise from CCLG.

Two of the funds will raise money for research into rare and under-funded cancers affecting children. The third will focus on the health needs of children who have survived cancer, known as ‘late effects’, and will be the only dedicated fund in the UK to support research into this area and other issues facing childhood cancer survivors.

Ashley Gamble, Chief Executive of CCLG, said: “We’re proud to be launching our Research Fund Programme to raise a significant amount of money for much-needed research into aspects of childhood cancer which don’t get as much recognition as they deserve. The Life After Childhood Cancer Research Fund is particularly unique because research into the health of cancer survivors is a relatively new and emerging area of study.

“We recognise that many families want to support research into childhood cancer, whether that is in recognition of successful treatment, the support their child received during treatment, or in memory of a child lost to cancer. Some families may not wish to set up their own charity, with all the admin burdens this can entail, or create a Special Named Fund for their child. Our Research Funds offer an alternative where family and friends can fundraise for the cause of their choice, and 100% of donations goes direct to the specific fund.

“If the programme is successful, we hope to extend it in the near future, launching further funds into specific diseases and areas of work to boost vital funding for research.”

The new research funds will complement CCLG’s successful Special Named Funds programme, which allows families to create a Special Named Fund in memory of their loved ones to support ongoing fundraising, usually for research into a specific type of childhood cancer. The Special Named Funds Programme has more than 30 active funds and raised more than £450,000 in 2018.

Nicky and Nathaniel, from Bury St Edmunds, lost their son Thomas in November 2015 at the age of four. They set up Thomas’ Fund, a CCLG Special Named Fund, in his memory to raise money for childhood brain tumour research.

Nicky said: “During two years of treatment, Thomas had 77 doses of chemotherapy and 18 anaesthetics, nine of which were for surgery, as the doctors tried to gain control of the tumour. He suffered from pain, peripheral neuropathy (damage to nerves in the extremities, such as the hands, feet and arms), kidney damage, constipation, diarrhoea, sickness and a weakened immune system requiring numerous hospital admissions for antibiotics.

“After Thomas passed away, we knew that we wanted to raise funds in his memory to support research into the particular type of brain tumour he had, in the hope that one day no child will have to go through what he did. Thomas’ Fund is a way for us to leave a lasting legacy for Thomas and working with CCLG means we can direct our fundraising to the research we are most passionate about.”

The Research Fund Programme will launch with the following three funds:

• Rhabdomyosarcoma Research Fund – Rhabdomyosarcoma (RMS) is a relatively rare and often aggressive childhood cancer, with poorer outcomes than some other childhood cancers. There is not currently a national charity fundraising specifically for research into this disease.
• Children’s Brain Tumour Research Fund – Brain tumours account for around 25% of all children’s cancer diagnoses, but around 32% of deaths, and are the biggest cancer killer of children. There is not currently a national charity fundraising specifically for research into childhood brain tumours.
• Life After Childhood Cancer Research Fund – Childhood cancer survivors have greater health needs than the general population. Successful treatment for childhood cancer can include highly toxic therapy, such as chemotherapy and radiation therapy, which can result in a number of side effects, including heart and hormone issues, and a higher risk of developing secondary cancers, which may not become apparent until several years after treatment. This will be the only dedicated fund in the UK to support research into the late effects of treatment and other issues facing childhood cancer survivors.

Dr Vicky Forster, a cancer survivor and cancer research scientist at The Hospital for Sick Children in Toronto, said: “I am very passionate about advocating for more research into late effects. Only now are enough people like me living to an age where we can effectively be studied in large numbers to find out what happens to us as a result of our early treatment. Hopefully, this will lead to better understanding and provisions for childhood cancer survivors and also ways to prevent or reduce late effects for children currently being treated for cancer and those who will be treated in the future.”

For more information about CCLG’s Research Funds Programme or how to donate, visit www.cclg.org.uk/researchfunds

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