Fundraising
Good 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.
SUDEP Action
News
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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.
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
CampaignsTen barriers SUDEP Action has broken down since 1995
Jane Hanna OBE identifies the top 10 barriers that SUDEP Action has fought since it was founded in 1995.
CampaignsShoelaces: A personal story of loss and perseverance
Roy Grimes has written a book of his experiences called Shoelaces following the death of his brother Nathan.
GeneralOmbudsman says health board failed vulnerable epilepsy patients
A complaint brought by seven families – who had been using a specialist service that stopped abruptly in June 2021 – has been upheld by the Ombudsman.
Fundraising“Never give up!” 3 x 3 peaks climbed in memory of Martin
Group climbs to the summit of all nine mountains in memory of Martin Morgan.
GeneralOur Coffee Clubs: A safe space for bereaved families
You’re welcome at the Coffee Club by our SUDEP Action team and volunteers.
CampaignsArtist Rachel brings colour to our 30 for 30 challenge
Trustee Rachel Shah is taking on the 30 for 30 challenge
Campaigns30 for 30 the Interim CEO’s perspective
Dan Freshwater explains why he is taking part in a 30 for 30 challenge
GeneralWhy I am donating regularly to SUDEP Action
“The short answer for why I am donating regularly and why I have helped raise over 7k for SUDEP Action is because the day after my wife, Sarah, died was the first time I heard of SUDEP.”
GeneralExciting opportunity launched for new research project
Applications invited for research award of up to £300k over one to four years.
FundraisingSnowdon climb in memory of Jasmine MacArthur
Jasmine MacArthur died due to epilepsy in March at just 16 years old.
FundraisingDaughter of former Trustee runs the London Marathon in memory of her sister
Kristen passed away in 1999 at the age of 25 and was eight months pregnant
FundraisingNine peaks in memory of Martin Morgan
Martin had been diagnosed with epilepsy when he was around 8 years old and hadn’t had a known seizure for 15 years before he passed away.
Campaigns‘New Charlie Cards will save lives’ says Charlie’s Mother
Charlie’s mother; Henrietta Hastings, and the coroner, say the systems in place, which were meant to protect her son, failed him.
General‘Together, as a movement, we were hard to ignore’
Catherine and Chris’s son Matthew died suddenly and unexpectedly in November 1991. He was just 21 and apart from having epilepsy, otherwise fit and healthy.
GeneralNew publication identifies priorities for SUDEP research
SUDEP Action has contributed to a new research paper published in Epilepsy & Behavior.
GeneralWhy SUDEP Action matters to me
Patricia Odd shares her experience of finding SUDEP Action after losing her daughter Katy.
General2002: How we took epilepsy deaths out of the shadows
Still widely cited and used today, the National Sentinel Clinical Audit of Epilepsy-Related Deaths found systemwide failures in the provision of epilepsy care.
EventsSUDEP Action remembers those who have lost their lives to epilepsy with London Memorial Service
The service was attended by over 200 people who travelled from all parts of the UK to remember and pay tribute to their loved ones.
FundraisingRunning the London Marathon in memory of Charlotte Iceton
“I’ve never been involved in anything like that. You know, everyone just supporting you.”
General1995: How we made political leaders listen
General“People make all of the difference, it’s very caring here”
Paul Marcham, Finance Manager retires after 8 years at SUDEP Action
GeneralSUDEP Action at 30: It began with five women wanting answers
GeneralWorld-leading epilepsy specialist becomes SUDEP Action trustee
SUDEP Action is delighted to welcome Professor Ley Sander as a new charity trustee renowned as one of the top epilepsy specialists in the world.
CampaignsOxfordshire MPs support SUDEP Action on Purple Day
The Oxfordshire MPs supporting SUDEP Action are also campaigning to improve services in the county to help families and clinicians.
CampaignsTower lights up for woman whose death saved eight lives
On Wednesday, March 26, just over two years after she died, Jessica’s parents have arranged for Blackpool Tower to be lit up in purple in her memory.
General‘Great examples of brilliance’
Professor Mike Kerr is now a Vice President of the charity, having recently stepped down as a Trustee,
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.
