A young Devon man living with a brain tumour is sponsoring three days of research at a Plymouth Research Centre of Excellence after completing the Exmoor Trail Half Marathon last year, raising more than £8,800 to help find a cure for the devastating disease.
Joshua Jones, 29, an engineering geologist from Plymouth, and his friend Ben Clarke from London, were inspired to support the charity Brain Tumour Research after Josh was diagnosed with a grade 3 astrocytoma in July 2023.
Thursday 6th of March, during Brain Tumour Awareness Month, Joshua and Ben, along with Josh’s dad Michael and Ben’s mum Debi, were invited to the Brain Tumour Research Centre of Excellence at The University of Plymouth to find out how their fundraising is helping support scientists working to improve the diagnosis and treatment of children and adults with brain tumours.
The team at the University of Plymouth are focusing particularly on research into low-grade brain tumours, which often go on to develop into high-grade brain tumours with much poorer prognoses for patients. The Centre, one of Europe’s leading research institutes for low-grade brain tumours, is proactively working with national and international groups to swiftly translate their research into clinical benefit for patients.
In December 2022, when Josh was 27, he unexpectedly suffered a seizure and collapsed unconscious while on a train to Germany with friends, including Ben. Josh was found to have what was thought to be a low-grade brain tumour and subsequently underwent an awake craniotomy at Derriford Hospital in May 2023. The craniotomy was successful but unfortunately left Josh with a fully paralysed right leg.
After five weeks of intensive physiotherapy with “the wonderful staff at the Mount Gould Plym Neuro Rehabilitation unit”, Josh was able to walk again. However, just after he was discharged home in July that year, he was given his biopsy results and learned that the brain tumour was actually a high-grade (malignant) astrocytoma.
Consequently, between August 2023 and September 2024, Josh had to have radiotherapy and chemotherapy treatment, as well as further physiotherapy in the community to improve his mobility. By October 2023, Josh was getting back into running, so he and Ben decided to sign up for the Exmoor Trail Half marathon to raise money for Brain Tumour Research. This was held on May 4th(Star Wars Day!) 2024, so Josh and Ben decided to do the run in star-wars themed outfits to further raise attention to the cause.
Josh’s chemotherapy treatment finished in September 2024, and he now has three-monthly scans to check for tumour growth.
Josh said: “Although I can now walk, run and play squash, I still find certain movements more difficult and am certainly not as quick as I was before my diagnosis. I also sometimes find that certain words don’t come to mind as easily as they might have done before.”
“My attitude to life has certainly changed since my diagnosis. I’m much more inclined to live for the day and seized the chance to spend six weeks travelling in South America towards the end of 2024.
Josh added: “It’s clear that the Government doesn’t give enough money to research brain tumours and perhaps doesn’t recognise the terrible impact they have on families.
“So it’s good to think that the donations we received through taking on the Exmoor Trail Half are helping to make a difference for people diagnosed with brain tumours in the future.”
Brain tumours kill more children and adults under the age of 40 than any other cancer, more women under 35 than breast cancer and more men under 70 than prostate cancer.
Following their fundraising, Josh and his group were given the opportunity to tour the labs at the University of Plymouth, led by director Professor Oliver Hanemann, chair of clinical neurobiology at the university, and spoke to scientists about their work to find a cure. They also placed three tiles dedicated to Josh and Ben on the Wall of Hope at the Centre, representative of the £2,740 it costs to sponsor each day of research.
Josh said: “I hope the money we’ve raised is life-changing and brings the day closer when a cure is found.”
Louise Aubrey, community development manager for Brain Tumour Research, said: “We’re really grateful to Josh and his family and friends for their support and generosity. We hope that their visit to our Centre of Excellence at Plymouth offered a useful insight into all we’re doing to improve treatment options for patients and, ultimately, find a cure.
“Just under 13% of those diagnosed with a brain tumour survive beyond five years compared with an average of 54% across all cancers, yet just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002. This has to change.”
Brain Tumour Research funds sustainable research at dedicated centres in the UK. It also campaigns for the Government and larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure. The charity is the driving force behind the call for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.
To find out more about sponsoring a day of research, go to www.braintumourresearch.org/fundraise/sponsor-a-day.
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