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Press release

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

Heartbreak as family loses beloved son to brain tumour

Heartbreak as family loses beloved son to brain tumour

A Buckingham family is mourning the tragic loss of a young man who has died four years after being diagnosed with an aggressive brain tumour.

Oli Hilsdon passed away surrounded by love and with his family by his side on Sunday 6 January, aged 26. Well-known and loved in the local community, Oli was a former pupil of Bourton Meadow Primary School and the Royal Latin Grammar School. His parents Jayne and Tim have lived in Buckingham all their lives, both coming from local families.

Gaining A-Levels in Maths, Further Maths and Economics, Oli went to Pembroke College, Cambridge University and graduated in 2014 with a degree in Economics. He landed a dream job at an American Private Equity firm in London. In August that same year Oli suffered a seizure and was subsequently diagnosed with a glioblastoma two weeks before Christmas. At the age of just 22, Oli was given a prognosis of 12 to 18 months.

Oli underwent chemotherapy, radiotherapy and immunotherapy. He continued to go out running almost daily and, buoyed up by the news that he was in remission, took on the gruelling challenge of running the London Marathon in 2016 to raise funds for the Milton Keynes-based Brain Tumour Research charity. He crossed the finishing line in less than four hours, raising an incredible £60,000 to fund research to help find a cure.

At the time Oli said: “When you are told you might not be around for much longer, it changes things. I wanted to run to prove to myself that I’m very much alive and I can do it.”

In June 2017, Oli’s only sibling, Emily, now 23, wanted to help make a difference and became a marketing assistant for Brain Tumour Research.

Devastatingly, Oli’s symptoms returned towards the end of 2017 and he underwent surgery, followed by months of chemotherapy. He was told his best chance of survival would be a vaccine made from the tumour itself, a pioneering treatment not available on the NHS.

Oli married his devoted fiancée Gigi in October 2018, who had supported him throughout, and his family launched the Oli’s Fight campaign to raise £230,000 to allow Oli to go ahead with treatment.

The community got behind Oli from day one with fundraising events across Buckingham, including his alma maters the Royal Latin and Pembroke College, Boycott Farm Shop, St. Bernardine’s Catholic Church, Hamilton House Care Home (where Oli’s grandmother lives). There were also quiz nights, sports events, a golf day, a football fundraiser, a yoga weekend, the Tingewick Community Café’s fundraiser (which also celebrated Harry and Megan’s Royal Wedding), a summer Oliday (involving a range of shops, pubs and restaurants in the town) and concerts by the Lenborough Singers and All the Range. A friend of Jayne’s organised an evening of music and an auction at the Royal Latin, which raised an incredible £13,000 towards treatment. Added to this, friends and neighbours took on fundraising challenges of their own ranging from a Tough Mudder and a half marathon to cycling the 500 miles between the Three Peaks, walking 270 miles along the Pennine Way or 200 miles along Wainwrights Coast to Coast.

Despite raising the necessary funds for Oli to start the vaccine treatment, whilst continuing chemotherapy, Oli’s condition deteriorated.

Just a year after treatment for breast cancer, Jayne found herself supporting Oli along his brain tumour journey. She was there for him every step of the way. When the community got behind Fight for Oli, Jayne took the trouble to thank each and every person and organisation involved in the fundraising campaign and poignantly commented: “It’s not what we have in life, but who we have in our lives that matters.”

Sue Farrington Smith who lost her beloved niece Alison Phelan to a brain tumour in June 2001 and is now chief executive of Brain Tumour Research, as well as trustee for Ali’s Dream, knows some of the pain the Hilsdons will be going through. Sue, who has known the family for many years since meeting Jayne through St Bernardine’s Catholic Church, said: “Oli was such an inspirational young man who touched everyone he met. He endured his diagnosis with bravery, courage and the determination to fight it to the end. The team and I are devastated by his loss; he was an icon who will remain forever in our hearts.

“His loss is also devastating for his family and many friends and, as we have seen through the Fight for Oli campaign, his positivity and passion to survive touched so many people in this close-knit community and beyond.

“Brain tumours kill more children and adults under the age of 40 than any other cancer yet, historically, just 1% of the national spend on cancer research has been allocated to this terrible disease. We are determined to change this. We have to find a cure.

“Oli’s passing brings home to all of us that this is what we are all fighting for. The Ali’s Dream and Brain Tumour Research teams will not give up until we have improved outcomes for patients and their loved ones. No parent should have to lose a child to this most awful of diseases. No family should have to suffer the heartbreak of losing a loved one.”

Money raised for Brain Tumour Research helps fund dedicated UK Research Centres of Excellence where scientists are focused on improving outcomes for patients and, ultimately, finding a cure. Historically, just 1% of the national spend on cancer research has been allocated to brain tumours and the charity is lobbying the government and the larger cancer charities to increase this.

 

For further information, please contact:

Susan Castle-Smith at Brain Tumour Research on 07887 241639 or Susan@braintumourresearch.org

 

Notes to Editors

Brain Tumour Research is the only national charity in the UK dedicated to raising funds for continuous and sustainable scientific research into brain tumours, and we are a leading voice calling for greater support and action for research into what scientists are calling the last battleground against cancer.

We are building a network of experts in sustainable research at dedicated Centres of Excellence whilst influencing the Government and larger cancer charities to invest more nationally.

We welcome recent funding announcements for research into brain tumours from the UK Government and Cancer Research UK – £65 million pledged over the next five years. However, this potential funding of £13 million a year comes with a catch – money will only be granted to quality research proposals and, due to the historic lack of investment, there may not be enough of these applications that qualify for grants from this pot.

We want research funding parity with breast cancer and leukaemia. We are calling for a £30-35 million investment every year for research into brain tumours in order to fund the basic research groundwork needed to accelerate the translation from laboratory discoveries into clinical trials and fast-track new therapies for this devastating disease.

The Brain Tumour Research charity is a powerful campaigning organisation and represents the voice of the brain tumour community across the UK. We helped establish and provide the ongoing Secretariat for the All Party Parliamentary Group for Brain Tumours (APPGBT) which published its report Brain Tumours A cost too much to bear? in 2018. Led by the charity, the report examines the economic and social impacts of a brain tumour diagnosis. We are also a key player in the development strategy for the Tessa Jowell Brain Cancer Mission. 

Key statistics on brain tumours:

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

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

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