SUDEP Action Day

October 4, 2025 • Events, Resources

SUDEP Action Day is coming up on October 15th and is a crucial time to raise awareness about Sudden Unexpected Death in Epilepsy (SUDEP). This year’s theme, ‘Hope Begins with a Conversation,’ empowers all to talk openly about SUDEP risks and prevention, because every conversation can be a step toward safety, understanding, and hope.

Join PAME (Partners Against Mortality in Epilepsy) in continuing this important conversation.

Learn more: https://pameonline.org/

Partner Resources:

SUDEP Action Day Events and Offerings:

Wednesday, October 15th, 10AM PST | 1PM EST: Pediatric Epilepsy Surgery Alliance Webinar
Sharing the Sibling Experience: Insights from Adult Siblings

Join Emily Holl, Director of the Sibling Support Project, along with adult siblings who grew up in families shaped by drug-resistant epilepsy and epilepsy surgery. We’ll explore the emotional impact of growing up with a medically complex sibling, how roles evolve into adulthood, and strategies to support all children in the family. (For teen or adult siblings and caregivers. Please note: discussion will include SUDEP.)

register here

CNF’s New Grief Community: Willow and Wind

This November, CNF is launching Willow and Wind, a grief community for families who have lost children of all ages. The group will meet during the first three weeks of November. The sessions are completely free. Additional information on the program is below. Beginning in January, they’ll expand the program to include an online community, podcast, and monthly meetup. Over time, this space will grow to support families experiencing all types of grief. CNF will continue to keep the community updated as it develops.

Use this link to sign up and share it with people who may be interested in joining:

2025 PAME Family Day and Conference: Wednesday, December 3rd: Family Day

Family Day is an afternoon session designed to support bereaved members through building community, providing education, and identifying engagement opportunities. Participants can expect to hear personal stories and learn about advocacy initiatives aimed at bringing about positive changes. Bereaved adults, professionals, and advocates are welcome to join us as we hear from those who have researched, studied, or experienced loss in their own lives. Due to the sensitive nature of the content and other considerations, it is encouraged that participants be over the age of 18.

Thursday, December 4th: Scientific Conference

The PAME Conference is the partnership’s flagship event and occurs in advance of the Annual AES meeting each year. PAME partners play an important role in the planning and dissemination of conference proceedings to patients, families, researchers, clinicians, and others. PAME meetings are scientifically rigorous and informed by the experiences of people impacted and bereaved by epilepsy. They are cross-sectoral in nature and include updates and discussions on the latest basic and clinical research, as well as directions in awareness and education. While SUDEP remains a thrust of the conference, other causes of mortality continue to be elevated. PAME maintains a special focus on younger investigators and highlights their work through a competitive abstract selection process.

more information