General
Valproate; guilty until proven innocent?
Why UK rules on a life-saving epilepsy medicine don’t make sense
SUDEP Action
News
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FundraisingMaisie Tothill Ball brings friends and family together
Purple-themed Ball held in memory of Maisie Tothill.
GeneralInquest held into death of Jacob Sunley
The inquest found that Jacob died of natural causes as a result of SUDEP.
FundraisingBig Purple Quiz support for the Charlie Card
Quiz night supports Charlie Cards in memory of Charlie Marriage.
GeneralPaul Warren joins SUDEP Action Board
New trustee Paul lost his sister to SUDEP in 2019.
GeneralForever Alive: Natalia’s story told on London stage
Lilianna performs play in memory of Natalia.
GeneralHow a letter to his late brother grew into a worldwide mission
Fraser Morton’s brother died of SUDEP, aged 19. Now. Fraser wants to reshape how epilepsy is understood.
Fundraising“It took losing Lucy for us to even learn about SUDEP”
Over £7,000 raised in memory of Lucy Grant in Mighty Stride Kiltwalk.
GeneralHealth Board given 28 days to clarify SUDEP risk plans
Neither Megan nor her family were properly informed of her risk of death.
GeneralMore Than a Conclusion: Our Ongoing Commitment to Megan’s Family and Clinical Change
Megan was 17 weeks pregnant when she died in June 2022 of SUDEP – Sudden Unexpected Death in Epilepsy.
FundraisingGood luck to our London Marathon runners
This weekend on Sunday 26th April is the London Marathon 2026, where four supporters will be taking part for SUDEP Action.
GeneralThe power of nature: A bereaved mother’s story
Sophie Pierce’s memoir The Green Hill: Letters to a Son, is coming out in paperback.
GeneralCommons debate highlights need to tackle failures in risk care
MP Olly Glover leads House of Commons debate on SUDEP and epilepsy risk communication.
GeneralLiving with epilepsy: The hidden reality
Madeline Bolton-Smith shares an extract of her book ‘Diary of an Epileptic: The Hidden Reality’
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.
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.
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.
