Emily’s £200,000 legacy to fund childhood brain cancer research

2 min read

Generous donations inspired by a student nurse who died of the most aggressive form of childhood cancer, will fund research aimed at improving survival rates for the disease.

Emily Oliver, a University of Nottingham undergraduate from Surrey, was diagnosed with a diffuse midline glioma (DMG) – also known as diffuse intrinsic pontine glioma (DIPG) – which has a devastatingly poor prognosis of just eight to 12 months, in January 2018.

She underwent NHS standard of care and travelled to Germany for privately funded treatment but died 18 months later, aged 21.

For her 21st birthday, Emily set up the Emily Oliver’s Fighting Fund – a supporter group of The Brain Tumour Charity – to which she asked friends and family to make donations instead of buying her presents. Since her death, Emily’s parents, Tim and Debi, have continued to fundraise in her memory, amassing a total of £200,000.

Now the couple has identified a suitable research project to fund at the Brain Tumour Research Centre of Excellence at the Sutton campus of the Institute of Cancer Research London, resulting in a unique collaboration between The Brain Tumour Charity and Brain Tumour Research.

Debi, 58, a retired GP, said: “We will never get over the pain of losing Emily, but knowing we’re doing what she wanted, helping others by funding research into the type of tumour she had, gives us great comfort.

“We’ve been looking for a suitable project for some time and are really excited to have finally found one. We wish all those working on it every success.”

The funding will allow the research team at ICR, led by Professor Chris Jones, to expand its ACVR1 and cholesterol metabolism project, which focuses on the relationship between the gene ACVR1, a known driver of cancer development in DMG, and the role of cholesterol metabolism in the development of these tumours.

It hopes to demonstrate that treating them with a combination of ACVR1 inhibitors and new drugs such as those aimed at emopamil-binding protein (EBP), a specific enzyme it has identified to play a critical role in this disease, could be added to existing treatments such as radiotherapy.

Our Chief Executive, Dan Knowles, said: “It seems incredibly fitting to be able to announce this exciting collaboration in our 15th anniversary year and during Brain Tumour Awareness Month. This project is a key component in the fight against this devastating childhood cancer.”

To help fund research, bring hope to families, and stop brain tumours devastating lives, make a donation. Together, we will find a cure.

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