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STXBP1 Foundation
What is STXBP1?
Patients & Families
Genetic Testing
Newly Diagnosed
Register in our Contact List
Enroll in STARR Study
Clinical Trials and Research
World Map
Global Connect
Clinics
Clinicians
The Scientific Director's Corner
Partners in Advocacy
Glossary
VIP Siblings Kits
Family Resources
Researchers
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 & Events
News
Blog
Newsletter
Podcasts
2025 Summit+
Million Dollar Bike Ride
Events
Past Conferences
Move To Cure
September Awareness Month
Patient-Focused Drug Development Meeting
Get Involved
Fundraise
Ways to Give
Volunteer
Community Connect
The Grands Society
Advocacy
Collateral & Brand
Store
About
About
Team
Scientific Advisory Board
Census
STXBP1 Film
Fast Forward Strategic Plan
Financials
Contact
Search
Donate
What is STXBP1?
Folder: Patients & Families
Back
Genetic Testing
Newly Diagnosed
Register in our Contact List
Enroll in STARR Study
Clinical Trials and Research
World Map
Global Connect
Clinics
Clinicians
The Scientific Director's Corner
Partners in Advocacy
Glossary
VIP Siblings Kits
Family Resources
Folder: Researchers
Back
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
Folder: News & Events
Back
News
Blog
Newsletter
Podcasts
2025 Summit+
Million Dollar Bike Ride
Events
Past Conferences
Move To Cure
September Awareness Month
Patient-Focused Drug Development Meeting
Folder: Get Involved
Back
Fundraise
Ways to Give
Volunteer
Community Connect
The Grands Society
Advocacy
Collateral & Brand
Store
Folder: About
Back
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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

Read More
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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Newer Posts

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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