Upcoming Events

Million Dollar Bike Ride
Philadelphia, PA
June 8, 2019 at 7:30am 
To join Lulu’s Crew for the bike ride please contact Erin Prosser at
To donate








1st  STXBP1 Scientific Conference
This is it! Our very first scientific conference will be an investigators exchange combined with a family meeting on June 21 – 22, 2019 in Philadelphia. Read all the exciting details we have planned already here: 1st STXBP1 Scientific Conference

Scientific Investigators & Family Meeting Register Now

Past Events


Our stand T3 was located in the Epilepsy Resource Area during the American Epilepsy Society’s Annual Conference in New Orleans on November 30 – Dec 4, 2018. Find more details about the AES conferences here.

2nd Annual STXBP1 5K Run

We ran on Saturday, October 13 in Marietta, OH and virtually to raise funds for our Foundation and our very first STXBP1 Scientific Conference. See results from last year and get all the details for this year here: 2nd Annual 5K Run


The RARE Carousel was a unique partnership between Festival of the Children Foundation and Global Genes that provided an exciting and innovative way for RARE disease organizations to raise funds, cultivate new donors, and increase awareness. The STXBP1 Foundation participated in the 2018 RARE Carousel from Feb 1 – Mar 15. Click here for more details.

American Epilepsy Society (AES) Dec 1 – 4, 2017

Jennifer and Stephanie staffed our stand in DC. Along with our presence onsite at the convention, we also held a Parent Dinner. See us at future AES conferences.

1st Annual STXBP1 5K Run

The Live Venue was at Devola Park 820 River Road, Marietta, OH 45750 on Sat, October 21, 2017. Our Virtual Venue was run from 2001 Hamilton Street, Philadelphia PA 19130.
Click here for more details

Stick it to STX Charity Ball
Doylestown Country Club, February 18, 2017

STXBP1 Parent’s Luncheon
Maggiano’s Philadelphia September 24, 2016

CSL Behring Check Presentation Ceremony
Children’s Hospital of Philadelphia June 17, 2016