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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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Two Parents Determination: Sagi and Ella’s Journey to Advance STXBP1 Research
Guest User 11/15/23 Guest User 11/15/23

Two Parents Determination: Sagi and Ella’s Journey to Advance STXBP1 Research

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STXBP1 Foundation Recognized as a 2023 Top-Rated Nonprofit by GreatNonprofits
Guest User 11/10/23 Guest User 11/10/23

STXBP1 Foundation Recognized as a 2023 Top-Rated Nonprofit by GreatNonprofits

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Personal Stories for Epilepsy Awareness Month
Guest User 11/5/23 Guest User 11/5/23

Personal Stories for Epilepsy Awareness Month

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The Voice of The STXBP1 Community: A Landmark FDA Meeting and A Rare Achievement
Guest User 11/3/23 Guest User 11/3/23

The Voice of The STXBP1 Community: A Landmark FDA Meeting and A Rare Achievement

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Insights from Families Living with STXBP1-Related Conditions
Guest User 10/30/23 Guest User 10/30/23

Insights from Families Living with STXBP1-Related Conditions

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First STXBP1 Family Meeting in Germany!
Guest User 10/12/23 Guest User 10/12/23

First STXBP1 Family Meeting in Germany!

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New to STXBP1 Research: The Nonsense Mouse Model
Guest User 10/3/23 Guest User 10/3/23

New to STXBP1 Research: The Nonsense Mouse Model

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Compelling Research Involving STXBP1 to Help Patients Get a Diagnosis More Quickly
Guest User 10/3/23 Guest User 10/3/23

Compelling Research Involving STXBP1 to Help Patients Get a Diagnosis More Quickly

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Exciting News: The STXBP1 Foundation is Growing!
Russ Novy 9/16/23 Russ Novy 9/16/23

Exciting News: The STXBP1 Foundation is Growing!

See How the STXBP1 Foundation Board Has Expanded

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STXBP1 STARR Webcast on Thursday, 8/17
Russ Novy 8/14/23 Russ Novy 8/14/23

STXBP1 STARR Webcast on Thursday, 8/17

Join live this Thursday or catch the recording afterwards

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Three Take Aways from STXBP1 Summit+ 2023
Charlene Rigby 8/13/23 Charlene Rigby 8/13/23

Three Take Aways from STXBP1 Summit+ 2023

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STARR, ESCO, and building the STXBP1 momentum: Perspectives from 2023 STXBP1 Summit+
Russ Novy 8/11/23 Russ Novy 8/11/23

STARR, ESCO, and building the STXBP1 momentum: Perspectives from 2023 STXBP1 Summit+

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Call for Board Members
Jared Barnum 8/6/23 Jared Barnum 8/6/23

Call for Board Members

Call for Board Members

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Highlights from the 1st European STXBP1 Summit and Researcher Roundtable
Russ Novy 7/13/23 Russ Novy 7/13/23

Highlights from the 1st European STXBP1 Summit and Researcher Roundtable

Get the Recap in our Science Center

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A New Resource from our friends at FOXG1 Syndrome
Russ Novy 6/9/23 Russ Novy 6/9/23

A New Resource from our friends at FOXG1 Syndrome

A Feel Good Resource to Teach Inclusion

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The role of genetic counselors in the mystery, hope, and heartbreak of neurogenetics
Russ Novy 5/19/23 Russ Novy 5/19/23

The role of genetic counselors in the mystery, hope, and heartbreak of neurogenetics

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Here is what you need to know in 2023 from Beyond the Ion Channel STXBP1
Russ Novy 5/17/23 Russ Novy 5/17/23

Here is what you need to know in 2023 from Beyond the Ion Channel STXBP1

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Caregiver Connect Video Series
Russ Novy 4/28/23 Russ Novy 4/28/23

Caregiver Connect Video Series

Watch this new video series developed for caregivers of any rare epilepsy.

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Help Complete a New Study Available For Parents & Caregivers by April 15th
Russ Novy 3/23/23 Russ Novy 3/23/23

Help Complete a New Study Available For Parents & Caregivers by April 15th

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Our Quest for an ICD-10 Code for STXBP1-Related Disorders
Charlene Rigby 3/15/23 Charlene Rigby 3/15/23

Our Quest for an ICD-10 Code for STXBP1-Related Disorders

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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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