New Safety and SUDEP Resources Available on SUDEP Action Day 2025

Wednesday, October 15 is SUDEP Action Day and for this day, we honor families’ very real concerns about safety and loss. STXBP1-related disorders are associated with a higher risk of early mortality than the general epilepsy population. In a Foundation-funded study, Elena Gardella and Francesca Furia from the Danish Epilepsy Centre and collaborators published a paper on early mortality in STXBP1-related disorders, which found SUDEP was the most common cause of death. We are now sharing practical resources and ways to talk with your care team, because preparedness and support matter.  

The "Early Mortality in STXBP1-related disorders" paper found an early mortality rate of 3.2%. This is higher than the incidence in the general epilepsy population, which is ~1.2%, and similar to other developmental and epileptic encephalopathies like SCN8A, but lower than Dravet syndrome (~8.6%).

Sudden Unexpected Death in Epilepsy (SUDEP) was the most common cause of death (36%), followed by pulmonary infections and respiratory complications (33%). The incidence of SUDEP peaked in mid-childhood. Causes other than SUDEP were more frequent in early childhood or adulthood.

This study highlights the importance of careful treatment and monitoring of epilepsies including regular specialist follow up, as well as caregiver education.  Thanks to all of our families, especially the families of our STXBP1 Angels who provided information or were interviewed as part of the study. Thanks to STXBP1 Global Connect for working collaboratively on our global STXBP1 census, which was used in the study.

Resources

The STXBP1 Foundation has posted safety and SUDEP resources on our website here:
https://www.stxbp1disorders.org/safety-and-stxbp1

The foundation has also posted bereavement and tissue donation resources here:
https://www.stxbp1disorders.org/bereavement

https://www.stxbp1disorders.org/tissue-donation

And, here are additional SUDEP resources:

Epilepsy Foundation [from October 2024]: https://www.epilepsy.com/complications-risks/early-death-sudep/sudep-action-day

SUDEP Action [UK group]:  https://sudep.org/events/sudep-action-day/

Epilepsy Alliance America’s free College Student Epilepsy Guide:
https://epilepsyallianceamerica.org/wp-content/uploads/2025/08/Epilepsy-College-Student-E-Book.pdf 

We’re grateful to the families who contributed to this work and to our global partners who continue to push for safer futures. If you need support or have ideas to strengthen these resources, please reach out.