Two of the UK’s leading cancer charities for young people, TYAC and CCLG, are shining a spotlight on the importance for specialist research into childhood and teenage brain tumours this Brain Tumour Awareness Month.

Brain tumours are the deadliest type of cancer for people under the age of 40 in the UK and around 400-500 children and young people are diagnosed each year.  At least 102,000 people are estimated to be currently living with a brain tumour in this country.[i]

As the country’s leading experts in childhood cancer, CCLG (Children’s Cancer and Leukaemia Group) plays a key role in funding and facilitating some of the world’s most vital research into childhood cancer. It’s Tissue Bank, which is celebrating its 20th anniversary this year, is the UK's largest collection of samples from childhood cancer patients, enabling scientists and researchers to find new methods of diagnosis, treatment and cure.

The charity relies on funds raised by the general public to enable this vital research, which otherwise would not be carried out.

The charity has recently teamed up with TYAC (Teenagers and Young Adults with Cancer), the UK’s only membership body for professionals who work with teenagers and young adults with cancer. As one of the most under-represented groups of cancer patients, both charities are now calling for more support to fund for research into specific brain cancers which affect young people such as astrocytoma, ependymomas, and medulloblastomas.

Dave Hobin, Chair of TYAC and Consultant Paediatric Oncologist, said: “Brain tumours are one of the most common types of cancer in teenagers and young people and more research needs to be done into how we diagnose and treat them in ways specific to this age group. Adults, children and teenagers need very different care - CCLG do a great job in facilitating research which finds kinder treatment options tailored to children and we must do the same for young people. There are many factors to take into consideration which sets this group apart, from jobs and education to relationships and fertility.

“With more funding, we can begin by collating more DNA, tumour and tissue samples from teenagers and young people and encourage more clinical trials for this age group. Armed with more knowledge we gain from scientific study, our TYAC members will be able to provide more specialised care and treatment, with the ultimate goal of saving more young lives.”

Edie Wilson, from Bishop’s Stortford, was just six when she was diagnosed with a malignant ependymoma brain tumour in 2011 and is now entering her teenage years. Over the past seven years, she has undergone two major brain surgeries to remove the tumour and has flown to the USA for ground-breaking proton therapy and a re-irradiation clinical trial. Sadly, in February 2015, Edie’s family were told that her cancer had spread to her spine and she immediately began an intensive seven-week course of full cranio-spinal radiotherapy, this time in the UK.

As her treatment continues, CCLG has enabled specialist research into ependymoma and other specific brain tumours, to help more young people like Edie.

Edie’s mum, Cate, said: “My daughter’s cancer is life limiting. We don’t know how long that is, her prognosis is poor as she has incurable cancer. Now that means today it is incurable – whether it will be in three years’ time, I don’t know – this is why research is so important. CCLG’s work allows parents like us to do all we can to work towards that cure through fundraising - and that means everything to us.

With more resources, more research can be carried out into specific brain tumours, such as ependymomas to give hope to more children and young people.

Chief Executive of CCLG, Ashley Gamble, said: “We are very proud of our work so far to help these families raise funds for vital research into cancer’s specific to their children, but more can be done. With the public’s help, we can create more research funds, supporting research into more types of cancer, to improve the care and treatment of more young people.

“Working with TYAC will undoubtedly help to share best practice and expertise to improve care for more young people across the UK. Our next focus is to build upon our work with children by encouraging research into cancer’s specific to teenagers and young people.”

To contribute to CCLG’s research funds and good work, visit: www.cclg.org.uk/donate

Children's Cancer and Leukaemia Group recently merged with TYAC (Teenagers and Young Adults with Cancer) the UK’s only membership body for professionals who work with teenagers and young adults with cancer. This has allowed for increased efficiency and the sharing of ideas, expertise and best practice across the two age groups to provide all young people with the best resources, treatment and care.

[i] https://www.braintumourresearch.org/