At the heart of the One in 100 campaign are the real lives of people impacted by epilepsy—our Campaign Champions. Meet Sophie, Faye, Joy and Murray; just four of the people behind the numbers whose stories reflect the hardships, the heartbreak—and the hope—of living with epilepsy.
SOPHIE
After being diagnosed aged 11, much of Sophie’s childhood and school life was shaped by epilepsy. “I wanted to be a normal kid so badly”, she says, “but it wasn’t always possible.”
I remember distinctly that I used to sprint across the playground when I knew a seizure was coming and have them in private. Once they grew in severity and I no longer had warnings of when they might come on, I had to tell people about my condition.
Thanks to this groundbreaking project funded by the Epilepsy Research Institute investigating electrical cortical stimulation, Sophie has been seizure-free for 10 years since undergoing surgery. But for many others, effective treatments remain out of reach.
Read Sophie’s story and see how you can help support the One in 100 here.
FAYE
Faye is 38, a trainee solicitor, qualified swim teacher and tea addict. She is Mummy to Noah, wife to Chris, daughter, sister, aunt, friend… and also happens to have epilepsy.
“I have been a child with epilepsy and a young adult at university managing my epilepsy alone for the first time. I have travelled the world, and I have been a woman, a pregnant woman and now a mum with epilepsy. It has given me a unique insight into life with this condition. More than ever in recent years, the need to advocate for women with epilepsy has been at the forefront of my mind.”
JOY
Joy’s sister Jill lived with epilepsy from the age of 21, when she was diagnosed during pregnancy. Tragically, she lost her life to a series of nocturnal seizures, aged just 41.
“I had to call my parents to tell them their daughter had died; it was the most difficult thing I ever had to do. Nothing seemed real in the hours that followed. It was like looking into someone else’s window; this couldn’t possibly be happening to our family.
“A few years later, I realised I had to do something—no matter how small—to help others.”
MURRAY
Since the age of 16, Murray has lived with epilepsy. Now 44, he recently took part in a successful trial for a new device designed to forecast seizures.
“If this technology can prevent others from experiencing harm, that would be my greatest wish and the most meaningful gift. This is why I believe in the importance of future epilepsy technologies, as I am already experiencing their impact first-hand.
“With continued data collection, advanced algorithms and predictive technology, I’m confident that others will benefit from this innovation.”
MAKE ADonation
Help us fund the next generation of research innovations
Whether it’s a one-off donation or signing up to be a regular giver, all the money raised in the One in 100 campaign will drive and enable life changing research into epilepsy.
WRITE TOYOUR MP
Invite your local MP to support epilepsy research
Use our letter template and MP finder to help us ensure that epilepsy remains a priority in Parliament and on the agenda of policymakers.
SHARE THECAMPAIGN
Spread the word and amplify our message
Use our campaign resources to help raise the profile of epilepsy research and encourage more people to join the movement for the One in 100.