Thank you to @Switalskis & Serjeants' Inn Chambers for their quiz night in memory of Charlie Marriage, raising £5,245 💜 Thanks to his mum Henrietta, family, friends & quizmaster Matthew.
Quiz: https://t.co/GlrfF4A8Sq
Legacy: https://t.co/riEUObYPh1
#Epilepsy
Is valproate guilty until proven innocent?
Our SUDEP Action experts, Jane Hanna OBE and Professor Heather Angus-Leppan, are clearing up the confusion around sodium valproate restrictions for boys and men.
Read more: https://t.co/XQvKSp2cSG
#SUDEP#Epilepsy#Valproate
“He graduated, worked hard, became independent, and was always respectful, polite and cheerful. I will always say that he was the best of us.”
Read Julio’s story: https://t.co/nD74JwpLQA
If you’d like to share your story, email [email protected]#SUDEP#EpilepsyAwareness
"It’s an occasion to bring people together who knew Maisie, to remember her, share stories, reflect on and celebrate Maisie's short life.” (James Tothill, Maisie’s dad)
Read more about the Maisie Tothill ball: https://t.co/C92Z0fkay5
#SUDEP#Epilepsy#EpilepsyAwareness
Routine conversations about seizure safety and SUDEP are an essential part of epilepsy care. 💜
The SUDEP & Seizure Safety Checklist empowers healthcare professionals and patients to have structured, person-centred discussions around epilepsy risks: https://t.co/M5FXosEZqp
If someone close to you has died from epilepsy/SUDEP please support our work by submitting to our Epilepsy Deaths Register https://t.co/OtfnBDfIh7
If you or a loved one has been affected by the issue of accessing medication /restrictions, please email [email protected]
(Friday). When Jacob’s family is ready, we will share more on their concerns and our drive to achieve a safety legacy for Jacob.
If anyone needs support from SUDEP Action, please do get in touch via [email protected] or call 01235 772852
His family will be telling Jacob’s story, including all the concerns that they took to the inquest. His parents said Jacob loved his life, he was an outgoing, intelligent, kind and beautiful young man with a huge circle of friends. His family adored him beyond measure.
Jacob Sunley was just 20 when he died. He was started on sodium valproate for epilepsy and was seizure-free for nearly three years. He changed from sodium valproate during the time that new restrictions for prescribing it to men and boys began.
In the months that followed, he had episodes of seizure including a cluster of three seizures in June 2025. He died on 3 August 2025. The inquest into his death yesterday found that he died of natural causes as a result of SUDEP.
“He was fun to be around, in his usual unassuming way – I miss that terribly.”
Tomorrow would have been the 39th wedding anniversary of David and Gerri Howarth.
Read David’s story: https://t.co/xL5dEKJBGH
#SUDEP#Epilepsy#EpilepsyAwareness
“I’ve only ever had one seizure, about a year ago, so have I got epilepsy? Do I still need to check in with my doctor?”
Hear from Dr Rhys Thomas, Consultant Neurologist and Clinical Trustee.
#Epilepsy#Seizures
We are thinking of the family of Jacob Sunley today. Jacob died of SUDEP in 2025. We will be alongside his family at the inquest today in Reading to provide support and expertise.
#SUDEP#EpilepsyAwareness
An international community of researchers, clinicians and advocates – including SUDEP Action – have laid out a unified roadmap to accelerate SUDEP prevention.
✅ Read the paper online: https://t.co/ZAsoSNXSOp
✅ Learn more : https://t.co/v27t5MAxgq
#SUDEP
Running out of medication can be life-threatening. 🚫💊
Know your rights to emergency medication if you live with epilepsy.
Download the Charlie Card today: https://t.co/JkuokGRI81
#Epilepsy#EpilepsyAwareness#CharlieCard
Last year, we raised an astonishing £18,815 in the @BigGive Christmas Challenge.
This year, we need your help again. Could you be one of our Match Funders?
Just email [email protected] for more information ❄️
#SUDEP#EpilepsyAwareness#BigGive
We are delighted to announce our new SUDEP Action trustee - Paul Warren!
The whole team are looking forward to working alongside Paul and having his expertise and support to hand 💜
Read more: https://t.co/mk0y78SlSf
#SUDEPAction#EpilepsyAwareness#SUDEP
New research from the Epilepsy Deaths Register sheds light on how we can improve safety, communication and care coordination for pregnant women with epilepsy.
Swipe to see what the data tells us ➡️
Your voices are driving clinical change: https://t.co/OtfnBDfIh7
#Epilepsy