Just 1% of the national research spend has been allocated to this devastating disease
The diagnosis of a brain tumour is devastating, however there is hope. We have been fortunate to meet some very brave people who have survived to tell the tale and who want to share their story to give hope to others.
Recently published stories
Keen dancer Connie Campbell was diagnosed with a grade 4 medulloblastoma in September 2022 following a sudden bout of headaches and sickness. The 11-year-old, from South Woodford, East London, underwent surgery and is now on a phase 3 clinical trial for high-risk medulloblastoma patients. She has had induction chemotherapy, 30 sessions of radiotherapy and will soon be starting a six-month course of maintenance chemo.
At the age of nine Giles, who lives in Gibraltar, was diagnosed with a diffuse astrocytoma after experiencing severe headaches and double vision. Existing medical conditions meant that treatment options for Giles, who is now 15, were restricted. His parents, Lynette and Ruben sought a second and third opinion to give their son the best chance of a future. Eventually he had an operation to remove the three tiny lesions on his brain. The teenager is now monitored with MRI scans to check for any re-growth.Read more
It was 2006 and Sally was 40 when she first noticed something could be wrong. It was thought the mum-of-two from Stourbridge in the West Midlands could have an eating disorder after dramatic weight loss. When she began to experience sickness a few months later, a gastroenterologist referred her for a CT scan and what she thought could be a problem with her stomach, turned out to be a tumour on her brain. Sally had surgery to remove a grade 1 astrocytoma in February 2007 and is monitored with an MRI scan every two years. Since her diagnosis, Sally, now 57, is a key figure in the brain tumour community finding a love of cycling which she has used to fundraise for Brain Tumour Research.Read more
Dan was at university when he started to suffer from crippling headaches which led to his eventual diagnosis with a grade 3 ependymoma brain tumour. Ten years on, he has had surgery three times and undergone radiotherapy. Although he lives with the knowledge that his tumour could return, he is optimistic about the future, having just moved into a new flat with his wife and working as a parliamentary researcher at Westminster.
After suffering seizures, former soldier Dan Mason, 33, was diagnosed with a pleomorphic xanthoastrocytoma – a very rare and incurable type of brain tumour. He was forced to quit the job he loved and lost his driving licence, yet still faced his diagnosis with positivity. A tattoo across his chest, which translates to ‘think positive, be strong’, reminds Dan to live in the moment, despite the pressure his illness places on him, his wife Roz and his children Caleb, 10, and Daisy, two.
“Emotionally, things were tough. I remember standing outside the hospital, in my army uniform, crying. My friends and family members didn’t know how to react or how to comfort me and that was really hard to deal with.”Read more
Dan Potts, 46, from Cumbria, loved going to the gym and keeping active with his wife Liah. He started getting headaches in December 2018, but it took two years and three MRI scans for Dan to be diagnosed with a glioblastoma (GBM) brain tumour. He had surgery, chemotherapy and radiotherapy and he is on four different medications to try and control his seizures. Dan and Liah are now preparing for their “last Christmas together”. They are crowdfunding for Brain Tumour Research and to make final memories.Read more
Daniel BurridgeDaniel is the youngest of three children with an older brother and sister. In his last year at Dr Challoner’s Grammar School in Amersham, Daniel is studying for A’ Levels in Further Maths, Physics and Geography, having already taken Maths last year. He is applying to university to study Mechanical Engineering and hopes to get a place at Imperial or Bath.
Aged 17, Daniel was just 5ft, 5in tall, despite his Dad being 6ft 4in. Investigations led to him being diagnosed with a tumour on his pituitary gland, which fortunately turned out to be benign.
“Mum found the six-week wait to learn whether the tumour was benign or malignant much more worrying than me. It really affected her, especially as, unbeknown to me, she went online and looked up pituitary gland tumours and discovered that in 20 per cent of cases they are malignant. I was more worried about whether I was going to be able to continue boxing, which I had enjoyed so much for the past five years.” Read more
Former professional footballer Danielle Gibbons, from Chorley in Lancashire, was 23 when she was diagnosed with a low-grade brain tumour, growing on the vestibulocochlear nerve, which helps to control hearing and balance. Just over a year later she was back on the pitch and, in November 2015, she received a Special Recognition Award at her club’s Player of the Year Awards. She’s no longer playing football for a living but 27-year-old Danielle is channelling her active and competitive nature into a fundraising challenge to raise awareness of brain tumours.Read more
Danielle Louise Gould
After experiencing months of painful headaches and issues with her balance, flight attendant, Danielle Louise Gould was diagnosed with a cerebellar hemangioblastoma brain tumour in 2012. Though her tumour was categorised as low-grade and not aggressive, Danielle still had to undergo 8 surgeries to remove the tumour and control the fluid build-up on her brain. With the support of her family, boyfriend and twin sister Cherise, Danielle rebuilt her life after the tumour and remains determined to continue working on her bucket list of goals with her sister before they turn 30 next year.
“I was taken to the John Radcliffe Hospital in Oxford, where an MRI scan revealed the nature of my tumour. It showed I had a tumour the size of a pea called a cerebellar hemangioblastoma in the centre of my brain, surrounded by a layer of fluid. This build-up of fluid, the size of an egg, was pushing on the cerebellum, which is the part of my brain that controls balance, movement and coordination.”Read more
Darcy was 21 months old when she was finally diagnosed with a brain tumour, but her mother had to fight to get medics to listen. She was still undergoing chemotherapy when her mother, Debbie was diagnosed with incurable cancer.
“Less than a year after Darcyana was diagnosed with a brain tumour, I found a lump in my breast…. I underwent a bone marrow biopsy which revealed that I had secondary breast cancer which had already spread to my bones. I didn’t think lightning could strike twice.”Read more
In May 2014, Dave Bolton, from the Wirral, Merseyside, suffered a nocturnal seizure, which led to the dad-of-two being diagnosed with a tennis ball-sized tumour in the frontal lobe of his brain. He underwent a life-saving craniotomy and the histology report showed it was a grade 2 astrocytoma, carrying with it a life expectancy of just five years. The Royal Air Force veteran, who was a serving police officer at the time of his diagnosis, was deemed unfit to resume full duties and was forced to take medical retirement. Dave went on to qualify as a strength and conditioning coach, specialising in rugby and combat sports and he set up a website to publicly document his treatment and diet regime, in order to support fellow patients. Seven years post-diagnosis, Dave’s scan results remain stable and he continues to offer advice and encouragement to others on similar journeys.Read more
David RickfordDavid was 28 when he was diagnosed with a brain tumour, having already recovered from Hodgkins Lymphoma. As his mother, I have really felt the utter helplessness of the situation and now want to do something to help others if I can. Read more
Father-of-four David Stubbs, from Stoke-on-Trent in Staffordshire, was diagnosed with a grade 1 meningioma in July 2021 at the age of 43, after suspected long COVID symptoms led to his diagnosis. As well as painful headaches and problems with his vision, David experienced a change in personality and extreme weight gain, later realising it was linked to his brain tumour. David lives with side effects of the tumour and is working with three leading brain tumour charities to raise awareness and fundraise to help other people living with their diagnosis.Read more