In Hope
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
Sally Grainger
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 moreJasmine Freeman
Young Jasmine from Bracknell, Berkshire, was diagnosed with a midline glioma (also known as DIPG) in February 2023. The seven-year-old began to complain of double vision and headaches in January so doting parents, Anthony and Jakki, took their only daughter to the GP. A precautionary MRI scan revealed the shocking discovery of an inoperable and cancerous mass on Jasmine’s brain. She is currently undergoing gruelling radiotherapy treatment. As the family come to terms with Jasmine’s life-limiting prognosis, they are raising awareness and funds in a hope to find a trial which can prolong their daughter’s life.
Read moreOrla Tuckwell
At just two years old Orla Tuckwell has endured four operations and gruelling chemotherapy, after being diagnosed with a medulloblastoma. Orla, from Broxbourne in Hertfordshire, was constantly sick for weeks before the brain tumour was discovered. Biopsy results then revealed the mutation of her tumour type is so rare specialists cannot find another case anywhere in Europe. The specialists are unsure how well the NHS standard of care will treat the tumour, so her family - including mum Naomi, dad Adam, and older sisters Ava, eight, and six-year-old Poppy are now crowdfunding to raise money in case they need to access private treatment in the UK or abroad, as well as help with rehabilitation costs for Orla to help manage and overcome the severe side effects of major brain surgery and high dose chemotherapy.
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Anastasia Pybus
After Anastasia from Romsey in Hampshire landed her dream job as a financial consultant she began to experience migraines. Concerned for her health, she had a private MRI scan and the day before her graduation from The University of Kent in March 2022, she was told she had an inoperable astrocytoma. At the age of 23 she has undergone fertility preservation before starting a long term course of chemotherapy. As she nears the end of her first intensive phase of treatment, Anastasia wants to share her story of what is like to be a young woman with a life-changing diagnosis.
Andrew Crowe
Andrew Crowe is in his early 40s and lives in Swindon. He has a brain tumour and has been through numerous operations and is trying hard to regain his normal life. Read moreAndrew Scarborough
Andrew was just 27 when he was diagnosed with a high-grade anaplastic astrocytoma brain tumour. He underwent surgery and began chemotherapy but after four months he stopped the treatment and made significant changes to his diet. Five years on and Andrew has had no tumour growth, and is continuing to follow a restricted Palaeolithic ketogenic diet. His quality of life has drastically improved and he is dedicating his studies to research into the disease.
“Research into brain tumours is the only hope. We need more studies and clinical data, but in the meantime, I will continue to use myself as a human guinea pig. I know my cancer could come back at any time but if we understand more from a metabolic standpoint, then brain tumours can potentially become a condition we live with, rather than a disease we die from. It’s my passion and my dream and I desperately want to help others and help to shape the future in a positive way”
Read moreAndrew Stammers
Andrew is a practising ordained Baptist Minister at Radstock Baptist Church in Somerset. He lives with his wife Suzanne and three daughters, Gracie, Tamzin and Amwyn. Read moreAndy Shipsey
Andy Shipsey was diagnosed with an acoustic neuroma five years
ago. Since then, he’s had to adapt to a new norm. Once a keen footballer,
runner and cyclist, his tumour caused irreversible deafness and vertigo, meaning
he can no longer enjoy the sports he loved. Andy, 37, works in
finance for University Hospitals Plymouth NHS Trust and lives in Plympton with his partner Ruth, 49, and her son
Ben, 23, who recently completed a 10k run for Brain Tumour Research.
Ann Brown
Mam-of-two Ann Brown had experienced a range of unusual symptoms for 16 years but it wasn’t until her life slowed down during the COVID-19 UK lockdown, that she noticed just how bad those symptoms had become. In May 2020, she was finally diagnosed with a meningioma brain tumour. She underwent a craniotomy, followed by a six-week course of radiotherapy treatment. Ann, 41, is now medically retired. As she reflects on a truly life-changing year, she is focusing on her family, as well as turning her attention to fundraising, to help find a cure for brain tumours. Read moreAnn Swadden
Ann was 24 and had been married to Alan for less than a year when she was diagnosed with a brain tumour. In March, National Brain Tumour Awareness month, she will undergo a craniotomy procedure to remove the low-grade glioma. She opted to have surgery rather than “watch and wait” as she wants to be free of the tumour when she moves into her new home and looks forward to starting a family.“I was given a choice: watch and wait or have surgery to remove the tumour. I have opted to have the operation on the basis that I am fit and healthy and have been advised I can expect to recover well. Without doubt, this is a really big thing but I know that there will be people around me whose job it is to make sure I don’t die and that I maintain a good quality of life. If anything, I am more apprehensive about the recovery than the operation itself. I know that I will need some form of speech therapy although my surgeon did joke that I was really good at talking so he didn’t think that would be a big problem!” Read more
Anna Berankova
Anna was diagnosed with a brain tumour after experiencing facial spasms and her face began to look asymmetrical. For many years she declined any intervention or conventional treatment, preferring instead to trust her own instinct and to “watch and wait.” But, when a scan revealed growth, albeit minimal, she had an important decision to make.
Read moreAnna Binks
Anna Binks, 43, from East Yorkshire, had an MRI scan in 2010 after blood tests revealed high prolactin levels. The scan found a suspected low-grade glioma which doctors were happy to monitor with regular scans. Ten years later, the mum-of-two started suffering from headaches and dizzy spells. She had another scan which found she had a diffuse astrocytoma brain tumour. Anna’s son, Jacob, seven, has taken on Brain Tumour Research’s One Million Keepy Uppy Challenge along with his teammates at South Cave Under 8’s Blacks to help fund a cure.
Read moreAnne Murdy
Registered nurse and mother-of-one Anne Murdy was diagnosed with a meningioma brain tumour in March 2020. The diagnosis came after several months of Anne going back and forth to her GP with a range of unusual symptoms, include urinary issues, changes to her voice, problems swallowing and increasing unsteadiness. The symptoms were initially thought to be related to the menopause but months later, when she was finally sent for an MRI scan, doctors found a golf-ball sized tumour in her brain.
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