October 15th marked SUDEP Action Day 2025 - one of the most important days in our annual calendar to raise awareness of Sudden Unexpected Death in Epilepsy amongst the epilepsy community across Ireland.
SUDEP stands for Sudden Unexpected Death in Epilepsy. SUDEP is confirmed when someone with epilepsy dies and no other cause of death can be found during the post-mortem. Many of those who die are often young and otherwise healthy. It is one of the most devastating aspects of epilepsy.
While there is still a lot of unknowns about SUDEP and the exact mechanism behind why it happens, we do know the better a person’s epilepsy is controlled, the lesser the risk of SUDEP.
As part of our activities for SUDEP Action Day, there was several initiatives undertaken by Epilepsy Ireland and those who have been bereaved to help raise awareness of this devastating aspect of the condition – as well as helping to amplify our advocacy campaign to help reduce SUDEP and epilepsy-related deaths in Ireland.
As part of this article, we have signposted to information, resources and media coverage which you may have missed as part of these activities.
- RTÉ News Coverage
The RTÉ News featured Arbella Scanlon sharing the devastating loss of her daughter Brianna due to SUDEP – as well as Epilepsy Ireland’s calls for a national strategy to reduce SUDEP and epilepsy-related deaths. You can read more about this and watch the interview as featured on the 6:1 News by visiting the RTÉ website. - Irish Independent Coverage
Lucy Owens story of the loss of her son Luke was featured in the Irish Independent online and print editions – alongside Epilepsy Ireland’s calls for a national strategy to reduce SUDEP and epilepsy-related deaths. You can read the articleby visiting the Irish Independent website. - Stories of families bereaved
Lucy’s story that was featured in the Irish Independent was also one of two stories shared to help raise awareness of SUDEP for SUDEP Action Day 2025 – highlighting the devastation caused by this aspect of epilepsy and why we need increased communication around it.
Alongside Lucy, Margaret Bassett also shared the story of the loss of her daughter Lisa to SUDEP over twenty years ago. Each of these stories are available to read in full on our website and you can access each via the buttons below.
We would like to thank Lucy, Margaret and their families for sharing these powerful and emotional testimonies in an effort to help others learn in their loved one’s memories.
Read Lucy's Story on our website
Read Margaret's Story on our website - SUDEP Action Day raised in the Seanad and Dáil questions submitted
In the lead up to SUDEP Action Day, Epilepsy Ireland contacted each member of the Oireachtas seeking their support for SUDEP Action Day and our campaign to reduce SUDEP and epilepsy-related deaths in Ireland. This led to the campaign being raised on the Seanad floor and also via Parliamentary questions. You can read more about this by visiting the ‘News’ section of our website.
You can also find out how you can help amplify our calls by contacting your local representatives by visiting the ‘News’ section of our website. - Video resource with Dr. Yvonne Langan
For SUDEP Action Day 2025, we released a video with Dr. Yvonne Langan speaking about SUDEP, SUDEP awareness and communication, SUDEP risk and the Epilepsy Ireland supported study which established the incidence of SUDEP in Ireland for the first time. Dr. Yvonne Langan is a Consultant Clinical Neurophysiologist at St James’s Hospital and to learn more about SUDEP from an expert working in this field, it is well worth 25 minutes of your time... -
Jazz Pharmaceuticals has provided a hands off unrestricted grant to help fund the production of this video as part of Epilepsy Ireland's campaign around SUDEP and SUDEP Action Day. Jazz have had no involvement or input into the content of the video
We would like to thank everyone for their support for SUDEP Action Day, and we hope that our campaign to reduce SUDEP and epilepsy-related deaths in Ireland will help save lives in the future. While SUDEP Action Day is over, it does not mean you cannot learn more about SUDEP and we would appeal to all people with epilepsy and their families to learn more about the risks of SUDEP and what can be done to reduce them. You can learn more about this by visiting the ‘SUDEP’ section of our website.
Finally, our thoughts continue to be with all those who have lost a loved one due to SUDEP or an epilepsy-related death.
Ar dheis Dé go raibh a n-anamacha.
If you need any information or support around your or a loved one's epilepsy, please do not hesitate to get in touch with your local Community Resource Officer. You can find their details by visiting the 'Our Local Services' section of our website.