Hi, I’m Laura. As we approach National Epilepsy Week (18 – 24 May 2026), I wanted to share my daughter Alex’s story, and why becoming involved in epilepsy research has been so important to our family.
Alex was seven when she had her first seizure in 2020. It was prolonged, terrifying and our first experience of epilepsy. Watching your child have a seizure and not knowing what is happening or whether they will be okay is something I’ll never forget. Alex was later diagnosed with childhood epilepsy with centrotemporal spikes and, despite medication, experienced another serious seizure later that year.
Thankfully, changes to her treatment have helped improve seizure control, but breakthrough seizures still happen. One of the hardest things as a parent is the uncertainty and helplessness you can feel when medication isn’t fully working.
A few weeks after Alex’s diagnosis, I started working with West Midlands Ambulance Service and became involved in epilepsy research through the Shape Network. I wanted to make sure parents’ experiences help shape research from the start, especially for families of children with additional needs who are often underrepresented.
Being involved in research gives me hope – hope for better treatments, earlier diagnosis and improved lives for families like mine. That’s why I’m supporting the work of the Epilepsy Research Institute this National Epilepsy Week.
Please consider making a donation to support life-changing epilepsy research and help bring us closer to a future free from epilepsy.
Thank you.
OTHER WAYS TO SUPPORT VITAL RESEARCH THIS NATIONAL EPILEPSY WEEK
WRITE TO YOUR MP
It takes two minutes to contact your MP using our locator and template. Encourage yours to become a parliamentary epilepsy research champion.
TAKE ON A CHALLENGE
Walk, run, jump, cycle or swim for epilepsy research! We have incredible challenges across the country and something to suit everyone.
SHARE YOUR STORY
Help increase understanding and fight epilepsy stigma. Share your experience, raise awareness and inspire others – use the hashtags #EpilepsyVoices and #EpilepsyWeek and we’ll help amplify your story.
GET INVOLVED IN RESEARCH
Our Shape Network is the UK’s largest group of research-interested people affected by epilepsy. See how your lived experience could help guide the science we fund.
HERE’S WHAT’S COMING UP…
Supporter reception and Research Awards 2026
We’re thrilled to welcome guests to our annual supporters’ reception on Thursday 21 May 2026, where we’ll be announcing the vital new research projects we’re funding this year, thanks to your continued generosity. Keep an eye on our social channels to learn more about the incredible projects we’re proud to support this year.
Our top challenge event picks
The Great North Run is the world’s largest half marathon and an unmissable event in the running calendar. For an equivalent race in the capital, it has to be The Big Half, organised by London Marathon events and boasting all the same central London glamour. And for the cyclists out there, the iconic London to Brighton cycle takes some beating!
Find these events and more here and sign up to the challenge of a lifetime this National Epilepsy Week.
Gift in Wills
I have complete confidence that my gift will be used wisely, to further the groundbreaking research for which the charity is well known. I would like future epilepsy researchers to have funding to build on that body of work and to help decades of future patients become seizure-free.
Jeannete, long-term supporter
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