SUDEP Action: Making every epilepsy death count

SUDEP Action: Making every epilepsy death count UK’s only charity that specialises in supporting and involving people bereaved by epilepsy Epilepsy Bereaved (founded 1995) is part of SUDEP Action.

SUDEP Action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths including Sudden Unexpected Death in epilepsy (SUDEP). We are the only UK charity specialised in
supporting and involving people bereaved by epilepsy. Our services include bereavement support, counselling, help with understanding the inquest process and in collaboration with UK research teams, the involv

ement of bereaved families and professionals in research through The Epilepsy Deaths Register. If you have been affected by an epilepsy related death please contact our support team via [email protected], or 01235 772852 if you are in the UK. SUDEP Action, registered charity 1164250 (England & Wales), SC047223 (Scotland).

Take to the skies for SUDEP Action! 🪂We're looking for fundraisers to take part in an incredible sponsored paraglide thi...
19/06/2026

Take to the skies for SUDEP Action! 🪂

We're looking for fundraisers to take part in an incredible sponsored paraglide this summer where you will get to experience arial views of the stunning South Downs.

The experience includes a tandem paraglide beginning in the Petersfield, Hampshire area as well as free videos of your glide. Your fundraising target will be a minimum of £500 to take part.

Register your interest: https://register.enthuse.com/ps/event/RegisteryourinterestinourParaglidingevent

19/06/2026

“Why do some people with epilepsy die suddenly and unexpectedly?”

Hear from CEO Sammy Ashby and Dr Rhys Thomas, Consultant Neurologist & Clinical Trustee! 🎤

We will be answering more questions on epilepsy and epilepsy safety in the coming weeks so give us a follow and stay tuned!

📢 Small Charity Week is coming! 💜Next week is Small Charity Week 2026 and as a small but dedicated charity we rely on ou...
19/06/2026

📢 Small Charity Week is coming! 💜

Next week is Small Charity Week 2026 and as a small but dedicated charity we rely on our supporters to make the impact that we do.

Our aim is to be the go-to place for bereavement support and to stop preventable epilepsy deaths. Every single share, conversation and donation helps us to make a monumental difference in the epilepsy community.

📆 Mark your calendars for next week and share this post to help us reach more people who might need our support services or life-saving resources.

Together, we can prevent future deaths and ensure no one faces epilepsy bereavement alone.

A big thank you to Switalskis Solicitors and Serjeants' Inn Chambers for their recent quiz night held in memory of Charl...
18/06/2026

A big thank you to Switalskis Solicitors and Serjeants' Inn Chambers for their recent quiz night held in memory of Charlie Marriage.

They raised £5,245 in memory of Charlie, who died from SUDEP in 2021. Thanks also to Matthew Holloway, quizmaster, and to Henrietta Hastings, Charlie’s Mum, and all his friends and family for making the event so impactful.

Members of the SUDEP Action team, Julia Stirling and Lauren Ashton attended the quiz, alongside trustee Alex Stirling and had a fantastic time.

Read more: https://sudep.org/big-purple-quiz-support-for-the-charlie-card/

Learn more about Charlie’s legacy: https://sudep.org/charlie-card/

Is valproate guilty until proven innocent? Our SUDEP Action experts, Jane Hanna OBE and Professor Heather Angus-Leppan, ...
18/06/2026

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 on to find out what the rules actually mean and how people with epilepsy can get support: www.sudep.org/valproate-guilty-until-proven-innocent

“He graduated, worked hard, became independent, and was always respectful, polite and cheerful. I will always say that h...
17/06/2026

“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://sudep.org/stories/julio/

If you’d like to share your story, please email our team at [email protected]

"We held the ball in memory of Maisie as a key part of our fundraising activities. It’s an occasion to bring people toge...
17/06/2026

"We held the ball in memory of Maisie as a key part of our fundraising activities. 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)

The Maisie Tothill Foundation held their third annual ball in memory of Maisie who died of SUDEP at the age of 22.

Read more: https://sudep.org/maisie-tothill-ball-brings-friends-and-family-together/

A heartfelt thank you to Susannah Fitchett for her incredible support of SUDEP Action, alongside others, in loving memor...
16/06/2026

A heartfelt thank you to Susannah Fitchett for her incredible support of SUDEP Action, alongside others, in loving memory of her daughter, Hannah.

Recently, Susannah and a group of friends held a stand at a local school, raising £150. She also secured the support of St Matthew’s Rosslyn Chapel, who chose SUDEP Action as one of their charities of the year.

Susannah and her friends have also created a beautiful handmade quilt, which is now being auctioned to raise further funds.

If you would like to take part in the silent auction for a chance to win this special quilt, please visit: https://tinyurl.com/quiltauctionepilepsy

Have you talked about seizure safety recently?The SUDEP & Seizure Safety Checklist helps healthcare professionals and pe...
16/06/2026

Have you talked about seizure safety recently?

The SUDEP & Seizure Safety Checklist helps healthcare professionals and people living with epilepsy discuss:
✅ Seizure risks
✅ Safety planning
✅ Wellbeing
✅ Support and care

Learn more: www.sudep.org/checklist

Because informed conversations can save lives.

Thank you for your messages and comments in relation to our post on Jacob Sunley’s inquest (Friday). When Jacob’s family...
15/06/2026

Thank you for your messages and comments in relation to our post on Jacob Sunley’s inquest (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

If someone close to you has died from epilepsy/SUDEP please support our work by submitting to our Epilepsy Deaths Register: https://epilepsydeathsregister.org/

If you or a loved one has been affected by the issue of accessing medication or medication restrictions, and you'd like to help us raise awareness of these issues, please email [email protected]

Address

18 Newbury Street
Wantage
OX128DA

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

Telephone

+441235772850

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