STXBP1
SYNGAP1
Million Dollar Bike Ride
Saturday, June 8th: registration open now!
A 10, 32, or 70 mile bike-ride fundraiser, organized by the Penn Medicine Orphan Disease Center, that takes place in early June. We invite you to join or sponsor Lulu’s Crew: Team STXBP1, the team the Prossers named after their daughter, Lucy.
STXBP1 STARR Study
A prospective, multi-site, natural history study (NHS) of STXBP1 Disorder. The NHS will help us gain a better understanding of how STXBP1 progresses over time and develop a standardized set of clinic assessments and biomarkers for STXBP1 patients.
Move to Cure
Walk, run, hike, or bike fundraiser that takes place wherever you are, anytime during September, STXBP1 Awareness month. Sponsored by the STXBP1 Foundation
STXBP1 Foundation
A 501(c)3 dedicated to raising awareness and finding a cure for STXBP1, a rare genetic neurodevelopmental disorder that includes epilepsy and cognitive impairment.
SynGAP Research Fund
Dedicated to furthering research on SynGAP1 and to supporting SynGAP families.