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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
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Contact
Search
Donate
What is STXBP1?
Folder: Patients & Families
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Newly Diagnosed
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Family Resources
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5 Marathons in 5 Days for Charlie
Russ Novy 5/17/25 Russ Novy 5/17/25

5 Marathons in 5 Days for Charlie

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Capsida Presents New GLP Toxicology Data Supporting Recent FDA IND Clearance of Its First-in-Class, IV-administered Gene Therapy for STXBP1 Developmental and Epileptic Encephalopathy
Russ Novy 5/14/25 Russ Novy 5/14/25

Capsida Presents New GLP Toxicology Data Supporting Recent FDA IND Clearance of Its First-in-Class, IV-administered Gene Therapy for STXBP1 Developmental and Epileptic Encephalopathy

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Capsida Receives FDA IND Clearance for Its First-in-Class, IV-administered Gene Therapy for STXBP1 Developmental and Epileptic Encephalopathy
Russ Novy 5/12/25 Russ Novy 5/12/25

Capsida Receives FDA IND Clearance for Its First-in-Class, IV-administered Gene Therapy for STXBP1 Developmental and Epileptic Encephalopathy

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Capsida to Present Progress Updates on CAP-002 at the ASGCT Annual Meeting
Russ Novy 5/2/25 Russ Novy 5/2/25

Capsida to Present Progress Updates on CAP-002 at the ASGCT Annual Meeting

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STXBP1 Census - Q1 2025
Charlene Rigby 3/30/25 Charlene Rigby 3/30/25

STXBP1 Census - Q1 2025

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Small Town. Loud Voice.
Russ Novy 3/28/25 Russ Novy 3/28/25

Small Town. Loud Voice.

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What happens when a rare disease drug seems to work, but the health care system doesn’t?
Russ Novy 2/5/25 Russ Novy 2/5/25

What happens when a rare disease drug seems to work, but the health care system doesn’t?

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Orphan Disease Center 2024 Million Dollar Bike Ride Grants - $139,416 for STXBP1 Research Awarded
Russ Novy 2/1/25 Russ Novy 2/1/25

Orphan Disease Center 2024 Million Dollar Bike Ride Grants - $139,416 for STXBP1 Research Awarded

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STXBP1 Foundation Accelerates Growth with Addition of New Executive Director
Russ Novy 1/14/25 Russ Novy 1/14/25

STXBP1 Foundation Accelerates Growth with Addition of New Executive Director

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STXBP1 Census - Q4 2024
Charlene Rigby 1/3/25 Charlene Rigby 1/3/25

STXBP1 Census - Q4 2024

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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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