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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
Clinicians
Family Resources
Clinics
Global Connect
Partners in Advocacy
The Scientific Director's Corner
Glossary
VIP Siblings Kits
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
September Awareness Month
Move To Cure
2025 Summit+
Million Dollar Bike Ride
Events
Past Conferences
Patient-Focused Drug Development Meeting
Get Involved
Fundraise
Ways to Give
Volunteer
Community Connect
The Grands Society
Advocacy
STXBP1 Advocates
Collateral & Brand
Store
About
About
Team
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STXBP1 Film
Fast Forward Strategic Plan
Financials
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About STXBP1
Search
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What is STXBP1?
Folder: Patients & Families
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Genetic Testing
Newly Diagnosed
Register in our Contact List
Enroll in STARR Study
Clinical Trials and Research
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Family Resources
Clinics
Global Connect
Partners in Advocacy
The Scientific Director's Corner
Glossary
VIP Siblings Kits
Folder: Researchers
Back
Researcher Resources
Basic and Preclinical Research
Clinical Trials and Observational Studies
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Million Dollar Bike Ride Grants for STXBP1
Research Funding Recipients
S-COMB Consortium
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Move To Cure
2025 Summit+
Million Dollar Bike Ride
Events
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Patient-Focused Drug Development Meeting
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2023 STXBP1 Summit+  Science Highlights are Now Available in Conference Preview Video
Russ Novy 7/13/23 Russ Novy 7/13/23

2023 STXBP1 Summit+ Science Highlights are Now Available in Conference Preview Video

See what science updates to watch for at this year’s conference.

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STXBP1 Foundation Organizes 5th Annual Family Conference for STXBP1-Related Disorders
Russ Novy 7/10/23 Russ Novy 7/10/23

STXBP1 Foundation Organizes 5th Annual Family Conference for STXBP1-Related Disorders

For the first time, the STXBP1 Foundation will hold the yearly event in the Western US, and provides an inclusive agenda encompassing scientific updates and community building

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STXBP1 Census - Q2 2023
Charlene Rigby 6/30/23 Charlene Rigby 6/30/23

STXBP1 Census - Q2 2023

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Help the STXBP1 Foundation build our biomarker repository. Work with our partner, COMBINEDBrain, at any industry conference near you.
Russ Novy 5/15/23 Russ Novy 5/15/23

Help the STXBP1 Foundation build our biomarker repository. Work with our partner, COMBINEDBrain, at any industry conference near you.

What actually is biomarker research?

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The First STXBP1 Census!
Charlene Rigby 4/2/23 Charlene Rigby 4/2/23

The First STXBP1 Census!

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Penn Rare Disease Scientist Studies Daughter's Epilepsy, Wins Grant
Russ Novy 3/7/23 Russ Novy 3/7/23

Penn Rare Disease Scientist Studies Daughter's Epilepsy, Wins Grant

Cover article from the Philadelphia Inquirer featuring Ben Prosser & Erin Prosser…and of course Lucy

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Rare in Times Square
Russ Novy 3/7/23 Russ Novy 3/7/23

Rare in Times Square

Wide exposure for STXBP1 Disorders during Rare Disease Day in NYC

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$25 Million Gift to Penn Medicine and Children’s Hospital of Philadelphia Establishes Center for Epilepsy and Neurodevelopmental Disorders
Russ Novy 2/7/23 Russ Novy 2/7/23

$25 Million Gift to Penn Medicine and Children’s Hospital of Philadelphia Establishes Center for Epilepsy and Neurodevelopmental Disorders

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Orphan Disease Center 2022 Million Dollar Bike Ride Grant Awards Announced
Charlene Rigby 2/1/23 Charlene Rigby 2/1/23

Orphan Disease Center 2022 Million Dollar Bike Ride Grant Awards Announced

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Uplifting Athletes and STXBP1 Foundation Fund $20,000 Grant to Dr. Alex Felix at University of Pennsylvania
Charlene Rigby 1/24/23 Charlene Rigby 1/24/23

Uplifting Athletes and STXBP1 Foundation Fund $20,000 Grant to Dr. Alex Felix at University of Pennsylvania

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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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info@stxbp1disorders.org

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