Today we are supporting #SUDEPActionDay2020 and reflecting that lives are not only interrupted by epilepsy, but sometimes tragically lost. We’re joining our charity partners SUDEP Action and calling on the epilepsy community to encourage vital conversations on epilepsy risks and SUDEP.

To mark SUDEP Action Day, Epilepsy Research UK held a Research Roundtable webinar on SUDEP with ex-WSJ journalist and Asia Matters podcast host Andrew Peaple, and ERUK Endeavour Project Grantholders, Dr Susan Duncan and Dr Amol Bhandare. Andrew hosted the session and shared his experiences of losing his sister Claire to SUDEP at the age of just 25.  The researchers explained what SUDEP is, what we know about the cellular mechanisms that cause it, and shared recent research into epilepsy-related deaths.

You can watch the full session here:

Shockingly, there are 21 epilepsy-related deaths every week in the UK, and it is estimated that SUDEP accounts for around half of these. SUDEP often occurs in young people during sleep.  An ERUK-funded study by Dr Beate Diehl is investigating how sleep affects brain regions and networks controlling areas associated with SUDEP, such as heartbeat and breathing. The project may also help uncover why SUDEP frequently happens during sleep. Dr Diehl’s colleague Dr Michalis Kassinopolous discussed this project in more detail on this week’s #ERUKResearchBlog, which you can read here.

Find out how you can join SUDEP Action and get involved in #SUDEPActionDay2020 here.