General
“Too many adults with a learning disability and epilepsy are still at risk of dying prematurely”
New research on the links between epilepsy and learning disabilities.
SUDEP Action
News
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GeneralEDR plays key role in understanding epilepsy deaths
SUDEP Action’s Epilepsy Deaths Register (EDR) is recognised for embracing vital data which could be missed by conventional mortality records.
General‘Brian shouldn’t have died in prison’
Brian was 47 when he died of SUDEP in Barlinnie Prison.
Fundraising‘Keenan was with me every step of the trek”
Ian McCrory takes on the 14-day trek to the Mount Everest Basecamp.
Fundraising“Every time I run, I talk to my daughter more than ever.”
Raquel will be running the London Marathon 2026 in memory of her daughter Caroline.
EventsHave your say on SUDEP Action events!
Help us shape the future – please complete our survey and let us know what you value and what you’d like us to do differently.
Fundraising‘Emily is the inspiration for my London Marathon run’
“It’s been a dream of mine to run the marathon in my city, in front of family and friends, all for SUDEP Action.” – James Hewitt
Fundraising“Will was always the first to volunteer to help, to raise money for causes”
Simon Maxfield shares why he is running for SUDEP Action.
GeneralForever Alive: Natalia’s story to be told in London show
“I had never heard of SUDEP, nor had my friends, nor Natalia’s mum. No doctors had mentioned it.”
FundraisingMarathon runner in-training on why she is supporting SUDEP Action
Sophie Yates shares her marathon training and why she is running the London Marathon 2026
GeneralFrom the CEO: It’s great to be back
Hear from our returning CEO Sammy Ashby and plans for 2026
GeneralPeople dying because of ‘missed opportunities and health inequalities’
The average age of death for someone with epilepsy as well as a learning disability is just 56.
GeneralUrgent action needed following probe into epilepsy deaths in UK prisons
Report: Preventable deaths linked to failures in managing epilepsy in prisons.
General‘Checklist must be rolled out as tribute to Clive’
Clive Treacey was failed in life, but his family are ensuring there is a lasting legacy in his name.
FundraisingLake District hike in memory of Jason Morland
Friends and family of Jason Morland say Jason had a heart of gold. Their hike around the Lake District was in his memory.
FundraisingHonouring Hinesh with bucket-list climb of Kilimanjaro
Matt Brinkley and Preema Patel conquered Kilimanjaro to fulfil a wish of Preema’s brother Hinesh.
GeneralSUDEP Action delighted to add Dr Rhys Thomas to Board
Dr Rhys Thomas has joined the Board of epilepsy charity SUDEP Action as a trustee.
GeneralAmber’s death highlights need for more SUDEP discussions
Amber Walker died of SUDEP in 2023. A Prevention of Future Deaths Report says more must be done to highlight SUDEP risks in patient discussions.
FundraisingRemembering Ryan with Goodie Fest
Abigail Birtles, Charlotte Templeman and Kieron Parry organise GoodieFest in memory of Ryan Goodman.
CampaignsMotion in Scottish Parliament to acknowledge SUDEP Action Day
MSP Monica Lennon lodges motion to recognise SUDEP Action Day
For one-to-one support after an epilepsy death contact our support team today
We provide the only support line for people bereaved by an epilepsy death and offer access to qualified counselling. Our dedicated support team has a special interest in, and understanding of, sudden and traumatic death.
