SUDEP Action

Dedicated to raising awareness of epilepsy risks & tackling all #epilepsy deaths including #SUDEP

Get in contact: [email protected]

[SUDEP Action @SudepAction]

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

[SUDEP Action @SudepAction]

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

[SUDEP Action @SudepAction]

“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

[SUDEP Action @SudepAction]

"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

[SUDEP Action @SudepAction]

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

[SUDEP Action @SudepAction]

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]

[SUDEP Action @SudepAction]

(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

[SUDEP Action @SudepAction]

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.

[SUDEP Action @SudepAction]

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.

[SUDEP Action @SudepAction]

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.

[SUDEP Action @SudepAction]

“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

[SUDEP Action @SudepAction]

“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

[SUDEP Action @SudepAction]

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

[SUDEP Action @SudepAction]

✅ Learn more about EpSMon: https://t.co/N0kfZOPl8W

✅ Learn more about the EDR: https://t.co/OtfnBDfIh7

#Epilepsy #EpilepsyAwareness

[SUDEP Action @SudepAction]

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

[SUDEP Action @SudepAction]

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

[SUDEP Action @SudepAction]

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

[SUDEP Action @SudepAction]

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

[SUDEP Action @SudepAction]

@epilepsymidwife We appreciate your support, Kim 💜

[SUDEP Action @SudepAction]

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