Highlights from the 2025 American Epilepsy Society Meeting

The STXBP1 Foundation spent several days in Atlanta at the 2025 American Epilepsy Society (AES) Meeting, one of the largest epilepsy conferences worldwide. Each year, more researchers, clinicians, and companies are focusing on STXBP1, and this year has demonstrated how quickly the field is advancing.

Several scientific posters showcased new data from our STARR Natural History Study, with contributions from teams at CHOP, Colorado, Stanford, and other sites. These presentations highlighted seizure patterns and developmental progress in children and adults with STXBP1, revealed EEG findings that may serve as important biomarkers for future clinical trials, and demonstrated improved ways to measure motor, cognitive, and behavioral changes over time. Together, these findings reinforce that STARR is becoming a leading resource for understanding STXBP1 and preparing the field for upcoming therapies.

Researchers also shared new insights into how STXBP1 influences the brain and how future treatments might work. New scientific models revealed early changes in brain development linked to STXBP1, providing important clues for therapy development. Several groups presented promising early laboratory results from gene therapy and other experimental methods. The team also received updates on current treatment options, which may benefit some individuals with STXBP1-related seizures.

AES is also a chance for us to meet with pharmaceutical partners and other advocacy groups. Industry teams continue to express strong support for the progress of the STARR Study and the engagement of our community. We also connected with many rare epilepsy organizations to share experiences and work together toward better treatments for all.

The momentum around STXBP1 has never been stronger. The science shared at AES 2025—much of it made possible by families participating in STARR—brings us one step closer to meaningful therapies.

Thank you to every family, clinician, and researcher pushing this work forward. Our community is leading the way.

Mark Quinlan - STXBP1 Foundation Executive Director