Teenagers and young adults deserve better

2 min read

During Teenage and Young Adult Cancer Awareness Month, we are highlighting the devastating statistics surrounding brain tumours and the desperate need for more effective treatments to give hope to patients and their loved ones.

Around 260 young people aged 13-24 are diagnosed with a brain tumour every year. They and their families are often faced with extremely limited options, and many find themselves forced to seek and fund costly treatment abroad.

Today (16th April 2024), on what should have been his 22nd birthday, we are remembering Josh Beresford-Smart. Josh was an active teenager, enjoying rugby, football and cricket, as well as drama, and had aspirations to become a human rights lawyer. But, in 2017, when he was just 15, Josh was diagnosed with a diffuse midline glioma (DMG, also known as DIPG).

Knowing that Josh’s survival prognosis was bleak, his family looked for other treatments, including clinical trials. They were frustrated to discover that when your child turns 16, they are treated like an adult and are expected to make medical decisions and sign for themselves. Despite this they are not allowed to access adult clinical trials, even as last-resort treatment.

Josh and his family were forced to privately fund a clinical trial in New York, which they are convinced extended his life, but sadly COVID-19 brought this avenue of treatment to an abrupt end.

After being told he wouldn’t be a priority for a ventilator if he caught COVID, as he’d already outlived his prognosis, Josh made the difficult decision to discontinue second-line chemotherapy treatment. He passed away on 19th February 2021, aged 18 – another life lost on the brink of adulthood.

Thanks to our incredible supporters, we are funding a team of scientists working at our Centre of Excellence at The Institute of Cancer Research to identify new treatments for high-grade glioma brain tumours occurring in children and young adults. Their goal is to get treatments into clinical trials within the next five years.

In his memory, Josh’s family launched a Fundraising Group called Team Joshua to  help bring hope to teenagers and young adults diagnosed in the future. You can donate to support Team Joshua’s fundraising by clicking here.

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