THE RARE CAROUSEL OF POSSIBLE DREAMS
The RARE Carousel is a unique partnership between Festival of the Children Foundation and Global Genes that provides an exciting and innovative way for RARE disease organizations to raise funds, cultivate new donors, and increase awareness. The STXBP1 Foundation is excited to be a participating organization in the 2018 RARE Carousel this Feb 1 – Mar 15. Click here for more details and jump on the carousel today.
Jennifer and Stephanie staffing 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 and Walk, Oct 21, 2017
Live Venue: Devola Park 820 River Road, Marietta, OH 45750
Date: Sat, October 21, 2017
Time: 8am – 12pm
Virtual Venue: 2001 Hamilton Street, Philadelphia PA 19130
STXBP1 Parent’s Luncheon
Date: September 24th, 2016
Location: Philadelphia, Maggiano’s
CSL Behring Check Presentation Ceremony
Date: June 17, 2016
Location:Children’s Hospital of Philadelphia