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STXBP1 Foundation
What is STXBP1?
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
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
Blog
Newsletter
Podcasts
September Awareness Month
Move To Cure
2025 Summit+
Million Dollar Bike Ride
Events
Past Conferences
Patient-Focused Drug Development Meeting
Fundraise
Ways to Give
Volunteer
Community Connect
The Grands Society
Advocacy
STXBP1 Advocates
Collateral & Brand
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Team
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STXBP1 Film
Fast Forward Strategic Plan
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Camden Different
Russ Novy 8/5/22 Russ Novy 8/5/22

Camden Different

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Capsida Natural History Study for STXBP1
Charlene Rigby 7/19/22 Charlene Rigby 7/19/22

Capsida Natural History Study for STXBP1

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Report on FDA Listening Session on STXBP1
Charlene Rigby 7/9/22 Charlene Rigby 7/9/22

Report on FDA Listening Session on STXBP1

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Update on the ORCA Communication Measure
Charlene Rigby 6/14/22 Charlene Rigby 6/14/22

Update on the ORCA Communication Measure

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The Distinct Roles of Glutamatergic and GABAergic Neurons in STXBP1 Phenotypes
Charlene Rigby 5/3/22 Charlene Rigby 5/3/22

The Distinct Roles of Glutamatergic and GABAergic Neurons in STXBP1 Phenotypes

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Participating in STXBP1 RARE-X Data Collection Program
Russ Novy 3/23/22 Russ Novy 3/23/22

Participating in STXBP1 RARE-X Data Collection Program

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Therapy Approaches for STXBP1 Disorder
Charlene Rigby 3/4/22 Charlene Rigby 3/4/22

Therapy Approaches for STXBP1 Disorder

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What Are Pharmacological Chaperones?
Charlene Rigby 3/4/22 Charlene Rigby 3/4/22

What Are Pharmacological Chaperones?

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Rare is Not
Russ Novy 2/9/22 Russ Novy 2/9/22

Rare is Not

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Chemical Chaperone Therapies for STXBP1
Charlene Rigby 1/13/22 Charlene Rigby 1/13/22

Chemical Chaperone Therapies for STXBP1

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Third Annual Synapse Roundtable: Collaboration at Its Finest
Charlene Rigby 12/22/21 Charlene Rigby 12/22/21

Third Annual Synapse Roundtable: Collaboration at Its Finest

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Welcome James Goss, New Scientific Director
Charlene Rigby 12/20/21 Charlene Rigby 12/20/21

Welcome James Goss, New Scientific Director

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Transition to Adulthood Study at University of Toronto and Transition to Adulthood Resources
Russ Novy 12/14/21 Russ Novy 12/14/21

Transition to Adulthood Study at University of Toronto and Transition to Adulthood Resources

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A Look Into Biomarkers and How They Could Be Applied to STXBP1
Charlene Rigby 8/11/21 Charlene Rigby 8/11/21

A Look Into Biomarkers and How They Could Be Applied to STXBP1

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How your Child’s Medical History is a Tool Towards a Cure
Charlene Rigby 6/26/21 Charlene Rigby 6/26/21

How your Child’s Medical History is a Tool Towards a Cure

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STXBP1 is Critical For Normal Neuronal Development
Charlene Rigby 6/11/21 Charlene Rigby 6/11/21

STXBP1 is Critical For Normal Neuronal Development

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Love is Being an STXBP1 Grandparent
Charlene Rigby 5/22/21 Charlene Rigby 5/22/21

Love is Being an STXBP1 Grandparent

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Welcome STXBP1 Italia
Charlene Rigby 5/14/21 Charlene Rigby 5/14/21

Welcome STXBP1 Italia

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Charlene Rigby 4/25/21 Charlene Rigby 4/25/21

STXBP1 Foundation is Part of COMBINEDBrain To Speed Clinical Trial Readiness

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Ciitizen Natural History Study Starts Recruitment April 16
Charlene Rigby 4/13/21 Charlene Rigby 4/13/21

Ciitizen Natural History Study Starts Recruitment April 16

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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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