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STXBP1 Foundation
What is STXBP1?
Genetic Testing
Newly Diagnosed
Register in our Contact List
Enroll in STARR Study
Clinical Trials and Research
World Map
Clinicians
Family Resources
Clinics
Global Connect
Partners in Advocacy
The Scientific Director's Corner
Glossary
VIP Siblings Kits
Researcher Resources
Basic and Preclinical Research
Clinical Trials and Observational Studies
Apply for a Grant
Million Dollar Bike Ride Grants for STXBP1
Research Funding Recipients
S-COMB Consortium
Publications & References
News
Blog
Newsletter
Podcasts
September Awareness Month
Move To Cure
2025 Summit+
Million Dollar Bike Ride
Events
Past Conferences
Patient-Focused Drug Development Meeting
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Volunteer
Community Connect
The Grands Society
Advocacy
STXBP1 Advocates
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Jaxson’s Story: Using Telemedicine to Reach Children With Rare Genetic Epilepsies
Charlene Rigby 7/2/20 Charlene Rigby 7/2/20

Jaxson’s Story: Using Telemedicine to Reach Children With Rare Genetic Epilepsies

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Lucy’s Story: Going All In to Cure a Rare Disease
Russ Novy 5/8/20 Russ Novy 5/8/20

Lucy’s Story: Going All In to Cure a Rare Disease

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Stxbp1/Munc18-1 haploinsufficiency impairs inhibition and mediates key neurological features of STXBP1 encephalopathy
Russ Novy 2/24/20 Russ Novy 2/24/20

Stxbp1/Munc18-1 haploinsufficiency impairs inhibition and mediates key neurological features of STXBP1 encephalopathy

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Orphan Disease Center Million Dollar Bike Ride Grant Awards
Charlene Rigby 1/9/20 Charlene Rigby 1/9/20

Orphan Disease Center Million Dollar Bike Ride Grant Awards

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STXBP1 Foundation President Profiled as Global Genes Rare Leader
Charlene Rigby 12/19/19 Charlene Rigby 12/19/19

STXBP1 Foundation President Profiled as Global Genes Rare Leader

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1st Research Funding Award
Charlene Rigby 11/28/19 Charlene Rigby 11/28/19

1st Research Funding Award

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About Us

The STXBP1 Foundation is a parent-led 501(c)3 non-profit (EIN #82-1439459). We are dedicated to creating awareness and finding a cure for STXBP1 disorders.

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