Brain tumours kill more children and adults under the age of 40 than any other cancer
Research Appreciation Day
Research Appreciation Day is a new annual awareness day – launched by MQ Mental Health Research – which aims to celebrate the hard work of health researchers from across disciplines.
On the first ever Research Appreciation Day, we’re sharing what it means to a handful of our supporters – who have dedicated time and energy to raising funds and awareness for our cause – to support our work, knowing that their efforts will benefit research to find a cure for all types of brain tumours.
“No child should be dying of a brain tumour in this day and age”
Olivia Taylor was just 17 months old when she was diagnosed with an inoperable optic nerve glioma in January 2018. Her symptoms, which included sickness, loss of balance and developing a lazy eye, were repeatedly dismissed by her GP as viruses.
Olivia’s mum Lisa said: “She went blind a few weeks after diagnosis. Since then, I can’t fault any of the team, but I do think if she’d been diagnosed even three months earlier, she would have kept her vision, so it’s clearly affected her life forever. Now she walks with a white cane and reads braille.”
Olivia receiving chemo
Now aged six, Olivia is on her third round of chemotherapy and having scans of her spine and brain every three months. Despite that, Olivia “never complains” and her mum describes her as a “really smiley, happy child […] crazy confident and really caring and resilient”.
Inspired by her daughter, Lisa is set take on a night-time Ben Nevis trek in August to raise funds for Brain Tumour Research. She’ll be joined by her sister, Eleanor Page, and colleagues, Julie-Anne Niblock and Lauren Turner.
“Sadly, I’ve known multiple children pass away from brain tumours. That’s the world I’m in now but it’s clear they aren’t rare. People always think it will never happen to them, but it easily could,” Lisa added.
“The money we raise will help fund research into new treatments which are desperately needed because the current ones are old and terrible on young bodies. We need new treatments, more awareness and faster diagnoses. No child should be dying of a brain tumour in this day and age.”
Olivia and Lisa
“I hope the money raised is life-changing”
Deirdre Cullen said she “couldn’t believe it” when her fit and active partner Terry was diagnosed with a glioblastoma (GBM) in 2019.
“It was such a shock to hear that Terry’s survival prognosis was only three months without any intervention, six months if he had a biopsy and chemotherapy and 12 to 18 months if he went for the standard treatment,” she said.
Terry had surgery, and underwent radiotherapy and chemotherapy. He also took part in a clinical trial, but had to stop because the medication was affecting his liver.
An MRI scan in May 2020 showed that the tumour was growing again. Further chemotherapy failed to stop the tumour and Terry passed away on 7th September 2020.
Deirdre said: “It makes me angry that treatments for brain tumour patients have barely changed in decades and research into finding better outcomes and ultimately a cure is so grossly underfunded.”
Terry and Deirdre
As well as asking for funeral donations to go to Brain Tumour Research and setting up a Much Loved page, Deirdre has made regular donations on anniversaries and birthdays. She raised more than £6,000 to help find a cure – enough to sponsor the equivalent of two days of research – and last month, visited our Centre of Excellence at Queen Mary University of London, where she placed tiles in Terry’s memory on our Wall of Hope.
Deirdre added: “I hope the money raised is life-changing and will help make a difference for everyone going forward who has a brain tumour.
“It was emotional placing Terry’s tiles on the Wall of Hope, but heartening to hear from the scientists about the work being done in their quest to find a cure.”
“Supporting a charity that focuses on research […] is vitally important”
After losing his mum to a brain tumour just years after his brother was diagnosed with the disease, Daniel Turner says his family were told their diagnoses were down to “bad luck”.
Daniel took part in the Brain Tumour Research Isle of Wight Randonnée last weekend (Saturday 1st July), motivated by his older brother, Shaun, who was diagnosed with a meningioma in 2014. Having had two operations, Shaun is monitored with regular scans.
The family was devastated by the disease a second time in December 2018, when they lost their mum, Jill, to a GBM, four months after she was diagnosed with the disease.
Daniel said: “For the disease to have struck our family twice was shocking and we have asked doctors the likelihood of passing it onto our children but they have said it is purely bad luck. My brother has had genetic testing and there is nothing to prove it is in your family gene – it’s just awful luck.”
Daniel, Jill and Shaun
He added: “Supporting a charity that focuses on the research into brain tumours is vitally important so we can help find better treatment options and eventually find a cure for the disease. It’s too late for my mum, but for people like Shaun who are living with the disease, we must progress the research of brain tumours and bring it in line with advances in the treatment of other cancers.”
Our thanks to each and every supporter who gets involved through fundraising, donating, campaigning, volunteering and raising awareness for our cause. We couldn’t continue to fund our vital research without you.