Together we will find a cure Donate
Together we will find a cure Donate

Press release

Less than 20% of those diagnosed with a brain tumour survive beyond five years

Family’s endeavour to celebrate milestone year of son lost to brain tumour

Family’s endeavour to celebrate milestone year of son lost to brain tumour

The family of a six-year-old boy who died of a brain tumour are taking on a gruelling challenge event to raise funds for research to find a cure for the disease.

Oscar Long died in November 2002 and now, to mark what would have been his 21st birthday, his mum is sharing his story for the first time in order to raise awareness of brain tumours which kill more children and adults under the age of 40 than any other cancer yet receive just 1% of the national spend on cancer research.

Sarah Long, 49, of Vicarage Road, Winslow, will be leading “Oscar’s 21st Army” as they take part in the gruelling Swanbourne Endeavour challenge on Sunday 22nd October.

She said: “Oscar was taken ill during the autumn half term. He had an aggressive and incurable brain tumour. There wasn’t any treatment which would give us more time so we took him home and made the most of the days we had left. Our precious boy never made it back to school and he died just two weeks later.”

Oscar had a diffuse intrinsic pontine glioma (DIPG), a highly aggressive type of brain cancer, which is the most lethal of all childhood brain tumours with the bleakest of survival rates.

His mum added: “There was nothing to save Oscar at the time. Nowadays we read about children travelling abroad for experimental treatment although, sadly, not much has changed in the 15 years since we lost our son. I hope that by sharing Oscar’s story as we celebrate what should have been his 21st year will help to raise awareness and to encourage the government and the larger cancer charities to invest more in research into brain tumours.”

This Endeavour challenge, which takes place on the Swanbourne Estate, is described by organisers as a “gutsy, gruelling off-road endurance event” and will see the 15-strong Oscar’s 21st Army plunge across country into chilly streams, wade across muddy fields, scramble across haystacks and even walk the plank.

Those taking part alongside Sarah include his brothers Ben, 23, and Leo, 14, plus friends, cousins and aunties. Cheering them on will be his dad David and sister Niamh, 12.

Sarah said: “Although our loss has become less raw over time, to have lost a child to this horrendous of diseases remains as devastating now as it was then.”

To make a donation to Brain Tumour Research via Oscar’s 21st Army JustGiving page go to


For further information, please contact:
Susan Castle-Smith at Brain Tumour Research on 01908 867206 or 07887 241639 or


Notes to Editors

Brain Tumour Research is the only national charity in the UK focused on funding sustainable research to find a cure for brain tumours. We are building a game-changing network of world-class Research Centres of Excellence in the UK. Embracing passionate member charities nationwide, £5.5 million was raised towards research and support during 2016.

We are campaigning to see the national spend on research into brain tumours increased to £30 - £35 million a year, in line with breast cancer and leukaemia. The charity is celebrating a year of high-profile campaigning on this issue following the unprecedented success of its petition in 2016. Following that, Brain Tumour Research is now taking a leading role in the Government’s Task and Finish Working Group convened to tackle the historic underfunding for research.

Key statistics on brain tumours:

  • Brain tumours kill more children and adults under the age of 40 than any other cancer
  • They kill more children than leukaemia
  • They kill more men under 45 than prostate cancer
  • They kill more women under 35 than breast cancer
  • Just 1% of the national spend on cancer research has been allocated to this devastating disease
  • In the UK 16,000 people each year are diagnosed with a brain tumour
  • Less than 20% of those diagnosed with a brain tumour survive beyond five years compared with an average of 50% across all cancers
  • Brain tumours are indiscriminate; they can affect anyone, at any age
  • Incidences of, and deaths from, brain tumours are increasing.

Please quote Brain Tumour Research as the source when using this information. Additional facts and statistics are available from our website including our latest Report on National Research Funding. We can also provide case-studies and research expertise for media.

Donate today

Help us build the UK's largest network of experts in sustainable brain tumour research and campaign for more investment nationally. Together we will find a cure.