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SUDEP Action, formerly Epilepsy Bereaved, began thirty years ago as a movement of grieving people who knew what they were being told wasn’t right and wanted to change things for the better. That’s still our goal. sudep.org/sudep-action-a… #epilepsy #nationalepilepsyweek

30 years of fighting for those with with epilepsy who have died - 3 decades of bringing together those who are bereaved, calling for change to save the lives of others, in memory of those who died too soon. So much has been achieved, but there is still much left to do 💜🧡💚♥️💙

In an era when many eminent professors of neurology claimed SUDEP didn’t exist, Stephen Brown did his own research – using a press cuttings service – to highlight the fact that deaths were being misreported: sudep.org/stephen-brown-… #SUDEP #epilepsy #nationalepilepsyweek

Mental Health Bill Public Bill Committee call for evidence: parliament.uk/business/news/…

Coroner warns of 'cover-up culture' at care home where neglected 12-year-old died, as Lewis Denison reports itv.com/news/2025-05-2…

Prof Wilcox raised several serious concerns about the home including that severely disabled children may not be receiving the level of care needed to keep them safe and more staff training was required She also warned there may be culture of cover up at Tadworth Children’s Trust

SUDEP Action has fought to change perceptions over the past three decades. Even before the charity officially existed, the founders were working to improve understanding of epilepsy risks. Find out more: sudep.org #SUDEP #epilepsy #nationalepilepsyweek

“You’ve got nothing to lose, and although it won’t bring a loved one back, it could save someone else suffering in the same way.” Report an epilepsy death today: epilepsydeathregister.org #SUDEP #epilepsy #epilepsyawareness

The year we first received charitable status, an All-Party Parliamentary Group for epilepsy was also formed by Leeds MP John Battle. Read more: sudep.org/1995-how-we-ma… #nationalepilepsyweek #epilepsy #SUDEP

It's #NationalEpilepsyWeek and I've written to the Government about the need for better care for people with epilepsy and a learning disability – and to tell them about Clive Treacey.facebook.com/share/p/1Bv7xy…

SUDEP Action Professor Rohit Shankar Professor Mike Kerr NHS Midlands NHS Midlands & Lancashire Epilepsy Action Tom Shillito 💜👍👍

Eternally grateful for your support in backing this serious issue, so close to our hearts and endlessly still affecting peoples life's Clive had so much respect and time for everyone and I know he would be so proud to see the support especially coming from his home community 👍

Elaine #justiceforClive🌹 A Conscience Manual Humbled by your passion & commitment 👏. It shows what impression you have made given the specifics mentioned right from our studies. Thank you. Please do not hesitate to rwxh out if more information/evidence is needed CIDER Research University of Plymouth Peninsula Medical School

An estimated 2 people per week in Scotland die from SUDEP - Sudden Unexpected Death in Epilepsy. Most people have never heard of it. That has to change. This is why we’ve launched The Seizure That Stole a Future. 🧵 #SUDEP #TheSeizureThatStoleAFuture #NationalEpilepsyWeek

This week, we’re sharing powerful stories from: 🔹 Kerry, who lost her son on Mother’s Day 🔹 Janette, who lost her daughter to SUDEP 🔹 Ross, who lives with the daily risk They speak with courage—so others aren’t left in the dark.

Let me boast a bit…

Learn more about the important legacy of Clive Treacey in improving epilepsy care: sudep.org/epilepsy-safet… #epilepsy #learningdisabilities #autismawareness

On leave and starting to draft an accessible version of my book. Strangely absorbing task with lovely illustrations by Grace Barnes.

Did you know the five rings on our logo represent our five founders, Jane Hanna, Catherine Brookes, Sheila Pring, Sue Kelk & Jennifer Preston? Each suffered personal loss but turned private pain into public gain, fighting for better research & understanding into epilepsy deaths.

Can you ask Mackey where the Learning from Lives and Deaths - LeDeR researchers report is? 6 months late now… abhorrent disrespect.