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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
Clinics
Clinicians
Family Resources
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
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Community Connect
The Grands Society
Advocacy
STXBP1 Advocates
Collateral & Brand
Store
About
About
Team
Scientific Advisory Board
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STXBP1 Film
Fast Forward Strategic Plan
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Contact
About STXBP1
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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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Unlocking STXBP1 through Electronic Medical Records
Russ Novy 11/9/22 Russ Novy 11/9/22

Unlocking STXBP1 through Electronic Medical Records

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The 2022 STXBP1 Summit – a personal reflection by Dr. Ingo Helbig
Russ Novy 9/7/22 Russ Novy 9/7/22

The 2022 STXBP1 Summit – a personal reflection by Dr. Ingo Helbig

It is not an exaggeration to say that STXBP1 is on the map in 2022 and it is one of the genes with the fastest growing knowledge.

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Grants available for research on therapeutic development for STXBP1 disorders
Jared Barnum 9/2/22 Jared Barnum 9/2/22

Grants available for research on therapeutic development for STXBP1 disorders

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$85K Raised at FCL Builders Golf Tournament!
Jared Barnum 8/14/22 Jared Barnum 8/14/22

$85K Raised at FCL Builders Golf Tournament!

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STXBP1 Disorders Featured on Detroit's NPR station
Russ Novy 8/5/22 Russ Novy 8/5/22

STXBP1 Disorders Featured on Detroit's NPR station

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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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