SUDEP Action aspires to stop preventable deaths from SUDEP Action aspires to stop preventable deaths from epilepsy

We are the only UK charity working alongside those who have lost loved ones to an epilepsy-related death

What is SUDEP? Bereavement support

About us

The only UK charity supporting and working alongside those whose loved ones have died suddenly from an epilepsy-related death.

SUDEP stands for Sudden Unexpected Death in Epilepsy. It’s when someone with epilepsy dies without warning and the post-mortem fails to establish any other cause of death.

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Latest news

All News

Find out what’s been happening within the charity in recent months and read more about our work and the projects we’re involved in.

General

Government pledges to work with SUDEP Action on epilepsy risks

Westminster meeting with Minister results in number of promises to collaborate with SUDEP Action.

General

New record dedicated to ‘those affected by SUDEP’

Band member Scott Hardcastle lost his sister Samantha to SUDEP in 2004.

General

Valproate; guilty until proven innocent?

Why UK rules on a life-saving epilepsy medicine don’t make sense

Fundraising

Maisie Tothill Ball brings friends and family together

Purple-themed Ball held in memory of Maisie Tothill.

General

Inquest held into death of Jacob Sunley

The inquest found that Jacob died of natural causes as a result of SUDEP.

Fundraising

Big Purple Quiz support for the Charlie Card

Quiz night supports Charlie Cards in memory of Charlie Marriage.

“SUDEP Action shone a light on the path I needed to walk. When the numbness wears off, people have disappeared. SUDEP Action stays by my side”

SUDEP Action is leading the fight to stop epilepsy-related deaths. It’s a charity with a genuine commitment to people – thoughtful and compassionate, but proactive and ready to fight for those who need someone in their corner.

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Our events & campaigns

All events

Our events are important because they bring people together.  And together we are stronger.

SUDEP Action Day

October
2026

SUDEP Action Day is dedicated to raising awareness of epilepsy deaths worldwide.

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My Way to 5K

October
2026

My Way to 5K is an annual event we’ve been running since 2020, which runs alongside SUDEP Action Day in October.

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Light Up the Sky

December
2026

We Light Up the Sky with love and with memories to remember those we have lost and support others…

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Purple Day

March
2027

Celebrated annually on March 26, Purple Day is all about increasing everyone’s understanding of epilepsy.

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Epilepsy Memorial Day

May
2027

This is an important day in our charity calendar and it’s about remembering all those we have lost to epilepsy / SUDEP.

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My Story

All Stories

Every story matters. Because every life matters.

Alan

Aged 30

I have (had) two sons, one born 1984, one in 1985. Less than 14 months between them, they were very lively…

Read their full story

Alison

Aged 16

On January 28, 2022, our sweet 16-year-old daughter Alison passed away from SUDEP. We found her face…

Read their full story

Amber

Aged 22

Our daughter didn’t need to die young. On 19 April 2023, we lost our beautiful daughter Amber. She was just 22 years old.

Read their full story

Andrea

Aged 59

Andrea dearly loved – and was so proud – of her son Fin, my partner, and they had an incredible bond.

Read their full story

EpSMon app

A digital tool for reducing risks

EpSMon is the epilepsy app. Developed by SUDEP Action, in partnership with a group of internationally renowned epilepsy experts, this free, easy-to-use app allows you to record, track and view your seizure data in one place and find out more about epilepsy. It’s designed to support professional care, not replace it.

For one-to-one support after an epilepsy death contact us today

We provide support to people bereaved due to epilepsy and offer access to dedicated specialists and counselling services.

Our services are tailored around you

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We keep learning from research to help save lives

Epilepsy Risks

With you on our side, we can make a difference

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Has someone close to you died because of epilepsy?

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