Grieving daughters and wife dedicate days of research to dad and husband lost to incurable brain tumour

Kay Brown, 42, from Northampton, Claire Pearce, 46, from North Shields, and Susan Edmonds from Sunderland have been supporting the charity Brain Tumour Research since dad and husband Barry Edmonds from Sunderland was diagnosed with a glioblastoma (GBM) brain tumour in May 2023.

Tragically he died just four months later on September 3, aged 67.

Yesterday (November 13), Claire, Kay and their mum Susan 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. It is the most common high-grade brain tumour among adults with an average survival prognosis of 12 to 18 months.

Claire said: “Mum and Dad had recently returned from a holiday in Spain, in April last year, when Dad began to behave strangely. They went to pick up a new car and Dad signed a document with the wrong date. Later started to become more forgetful and had memory problems.”

Thinking that Barry had suffered a stroke, the couple went to A&E where a scan revealed an incurable brain tumour. Barry underwent surgery but had a bleed on the brain just a few days later. He underwent a second surgical procedure to fit a shunt, but before he could even start radiotherapy or chemotherapy treatment, the tumour had grown back.

Kay said: “Dad was put on steroids and for a few weeks, while not himself, he was still able to communicate. He deteriorated very quickly, it was heartbreaking. Brain cancer is such a horrible disease. It literally takes the person away from you so that we really lost Dad almost from the day he was diagnosed.”

Claire added: “It was emotional seeing Dad’s tiles on the Wall of Hope. I still can’t believe that his cancer was incurable – so much funding seems to go into researching other forms of cancer, while brain tumours lag so far behind.

“It’s some comfort to think that all the donations made in Dad’s memory are helping to make a difference for people diagnosed with brain tumours in the future – tragically they devastate too many families.”

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.

In August 2023, in the last few weeks before losing Barry, Kay, Claire, Susan, along with and family and friends (calling themselves Barry’s Army), took part in the charity’s fundraising campaigns, 10,000 Steps a Day, and Cycle 274 Miles in August. This year, they set a target to complete a collective total of 1,956 miles to reflect the year Barry was born, but admirably surpassed this, achieving an incredible total of 2,484 miles.

Susan, Kay and Claire were given the opportunity to tour the labs at Queen Mary University of London, led by principal investigator Professor Silvia Marino, and spoke to scientists about their work to find a cure.

Susan said: “Sadly, it’s too late for Barry, but I hope the money we’ve donated is life-changing and brings the day closer when a cure is found and families don’t have to go through what we have.”

Ashley McWilliams, community development manager for Brain Tumour Research, said: “We’re really grateful to Barry’s family for their support and generosity. We hope that their 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 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