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Million Dollar Bike Ride logo

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.



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 STXBP1 disorders logo

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 Disorders

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 Logo

SynGAP Research Fund

Dedicated to furthering research on SynGAP1 and to supporting SynGAP families.