2024 STXBP1 Summit+
What an amazing STXBP1 Summit+ annual conference it was with over 300 in attendance throughout the four days of meetings. 115 researchers & medical professionals met on Thursday and Friday for the Research Roundtable to present and collaborate on potential treatments, therapies, biomarkers, clinical findings, and more. Friday evening was the Shining Stars Dinner & Dance party where the STXBP1 stars were shining bright. We also launched our very first Impact Awards for outstanding efforts towards STXBP1-related disorders research and community involvement.
Our families listened to speakers throughout the day on Saturday addressing clinical care, STARR natural history study updates, research updates & a new clinical trial readiness initiative: Get Ready! It was a very informative day. We then wrapped up Saturday with a Family Movie night where families watched the wonderful movie “Wish”.
The weekend concluded with family support sessions on AAC and a Grief workshop, as well as a parent panel discussion on all things STXBP1. Many connections made, collaborations formed, and the feeling of HOPE was palpable as we Get Ready to Fast Forward our STXBP1 community into clinical trials.
Here’s a recap with key take-aways from the Research Roundtable, from our Scientific Director, James Goss. And you can find session recordings here and photos here.
We couldn’t have made this event possible with out the support of our incredible sponsors & supporters! A big thank you to the Kahrl family for their generous support as well as Amgen, Biogen, BioMarin, Bial, Capsida Biotherapeutics, CURE Epilepsy, Encoded Therapeutics, Longboard Pharmaceuticals, Simons Searchlight, Quiver Bioscience, and UCB Pharmaceuticals.
2024 STXBP1 Disorders Impact Award Winners
Innovative Research: Mingshan Xue
Clinical Breakthrough: Ingo Helbig, MD
Transformative Changemakers: Bridget Finn and Sam Beaubien / FLOURISH
Advocacy Award: Erin Prosser
Patient Ambassador: Lily Kahrl