A woman who lost her husband to an aggressive brain tumour and set up a Fundraising Group, along with her adult children, for the charity Brain Tumour Research, has raised more than £12,600 to help fund research to find a cure for the devastating disease.
Alison Lilley, from Bridgnorth, set up John’s Crew, after John passed away from a glioblastoma (GBM) brain tumour in May 2023, aged 61. The most commonly diagnosed aggressive brain tumour in adults, just 25% of patients survive more than a year, dropping to 5% surviving more than five years.
John’s diagnosis came about after he suffered a seizure. He underwent surgery, as well as radiotherapy and chemotherapy, but the tumour returned and John had to face further chemotherapy and multiple blood transfusions. Sadly, however, nothing could save him.
Alison said: “John was the best husband. We had 40 happy years together, 38 as a married couple. John’s plan was to retire at the age of 60 so that we could go on a world cruise – instead he was diagnosed with an incurable brain tumour.”
Yesterday (10 July), Alison, her son Daniel, 38, from Worcester and his wife Tilini, 36, were invited to the Brain Tumour Research Centre of Excellence at Queen Mary University of London to find out how their fundraising is helping support scientists leading the way in research into GBM.
Since losing John, the family has found new purpose focusing on fundraising to find better patient outcomes for the cancer which kills more children and adults under the age of 40 than any other.
Their charity events and challenges have included a family Walk of Hope, a firewalk, and an abseil. Alison and John’s niece, Gracie Kelly, took on a Jump for Hope skydive last month from Bristol (Whitchurch) Airport. Meanwhile the RAC in Walsall, where Daniel is a product manager, has chosen Brain Tumour Research as its Charity of the Year, raising more than £3,000 already through a range of fundraisers, including holding a fun day for employees, taking part in Wear A Hat Day and payroll giving.
Alison said: “I was really shocked to discover after John’s diagnosis that treatment for brain tumours has barely changed for decades and that just 1% of the national spend on cancer research has been allocated to brain tumours since records began in 2002.
“Setting up John’s Crew with my daughter Charlotte has allowed us to focus on trying to make a difference for people diagnosed with brain tumours in the future – tragically they devastate too many families.
“But we all miss John so much – never more so than when Charlotte gave birth to our first grandchild Bonnie at the end of May this year.”
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.
The trio were given the opportunity to tour the labs at Queen Mary University of London, led by principal investigator Professor Silvia Marino.
They spoke to scientists about their work to find a cure for the disease and placed two tiles on the Wall of Hope in John’s memory.
Daniel said: “Sadly, it’s too late for Dad, but I hope the money we’ve donated is life-changing.
“It is heartening to hear from the scientists about the work being done in their quest to find a cure, which can’t come soon enough.”
Louise Aubrey, community development manager for Brain Tumour Research, said: “We’re really grateful to Alison, Daniel and Tilini and all who support John’s Crew for their incredible support and generosity. We hope that the Lilley family’s visit to our Centre of Excellence at Queen Mary University of London offered a useful insight into all we’re doing to improve treatment options for patients and, ultimately, find a cure.
“Just 12% 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 braintumourresearch.org/pages/sponsor-a-day.
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