What The SCN2A Foundation does

The SCN2A Foundation is a 501(c)(3) nonprofit patient advocacy organization co-founded in 2023 by Shannon Curry, RN, and Jason Curry after their son Jack received an SCN2A genetic diagnosis. The foundation's stated mission is to accelerate targeted therapeutic development for SCN2A-related disorders — a set of rare CNS conditions affecting brain sodium channels that sit at the intersection of untreatable epilepsy, autism, and other physical presentations. It operates from a registered office in Dover, Delaware (EIN: 92-2444780) and is privately held with no parent company, institutional investors, or subsidiaries.

The foundation's product surface consists of four core digital assets: the SCN2A Global Contact Registry (HIPAA/GDPR-compliant intake and short-form registry connecting families to research), the EMBRAVE 3 Clinical Trial Pre-Screener (a web-based eligibility questionnaire for the Praxis Precision Medicines PRAX-222 registrational trial in gain-of-function patients ages 1-18), SCN2A AI (a custom GPT built on ChatGPT that helps families interpret SCN2A variant classifications), and an educational blog covering epilepsy, mutation types, pharmacogenetics, and therapeutic approaches. The foundation does not develop proprietary therapeutic technology; instead it operates a research-coordination model that funds targeted studies, operates patient registries, and acts as a clinical trial recruitment channel.

Revenue is generated exclusively through charitable donations accepted via website, cryptocurrency, Donor Advised Funds, check, wire, and stock transfers; no products or services are sold, no pricing exists, and revenue figures are not publicly disclosed. The foundation serves four named customer segments — SCN2A patient families (primary), healthcare providers, researchers/scientists, and donors/supporters — and has assembled a network of core partnerships with Praxis Precision Medicines, Unravel Biosciences, and COMBINEDBrain, alongside supporting research resource partnerships with Simons Searchlight, SFARI Gene, Jackson Laboratory, NCBI, and GeneCards.

Name

The SCN2A Foundation

Legal name

SCN2A Foundation

Website

https://scn2afoundation.org

Company type

Private

Founded year

2023

Operating status

Operating

Headcount range

1–10 employees

Short description

The SCN2A Foundation is a 501(c)(3) nonprofit founded in 2023 that accelerates targeted therapeutic research for SCN2A-related neurological disorders. It serves SCN2A patient families, clinicians, and researchers through a global contact registry, clinical trial pre-screener, custom GPT variant-interpretation tool, and partnerships with biotech and academic organizations.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Voluntary Health Organizations (813212)

SIC

Services-Membership Organizations (8600)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• Rare disease advocacy
• Patient registry services
• Research funding coordination
• Genetic disorder support
• Clinical trial facilitation

Headquarters

HQ city

Allison Park

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Technology or R&D, Marketing or Sales, Operations, Others

Revenue model

1. Donations and Fundraising: The SCN2A Foundation generates revenue through charitable donations from individuals, families, and supporters. The foundation accepts donations via website, cryptocurrency, Donor Advised Funds (DAF), check, wire, and stock transfers.

Distribution channels4 records

Marketing channels8 records

Core offering

The SCN2A Foundation is a 501(c)(3) nonprofit patient advocacy organization that funds and coordinates targeted research into SCN2A-related disorders, maintains a global patient contact registry, and operates clinical trial pre-screeners (notably for the Praxis Precision Medicines EMBRAVE 3 registrational study). It provides free educational resources, an AI-based variant interpretation tool (SCN2A AI), and a global community connecting affected families, clinicians, and researchers.

Product overview

The SCN2A Foundation operates as a patient advocacy nonprofit offering a suite of digital tools and resources for families affected by SCN2A-related disorders. The core offerings include: (1) SCN2A AI, a ChatGPT-based conversational AI tool for variant interpretation; (2) the EMBRAVE 3 Clinical Trial Pre-Screener, a web-based eligibility questionnaire for the ongoing PRAX-222 clinical trial; (3) the SCN2A Global Contact Registry, a patient registry connecting families with research opportunities; and (4) the SCN2A Foundation Blog, an educational resource hub with guides on epilepsy, mutation types, autism, and therapeutic approaches. These products collectively support patient education, clinical trial recruitment, and community building for a rare genetic neurological disorder affecting brain sodium channel function.

Differentiator

Problem solved

Functional benefit

Products and services

• SCN2A AI A ChatGPT-based custom GPT tool that helps families affected by SCN2A-related disorders understand genetic variants, mutation types (gain-of-function, loss-of-function, mixed function), and variant classifications through natural language conversational interaction. It is a free patient-facing educational resource for newly diagnosed families.
• EMBRAVE 3 Clinical Trial Pre-Screener A web-based eligibility questionnaire that helps families determine if their child qualifies for the EMBRAVE 3 registrational study (PRAX-222) targeting children ages 1-18 with confirmed SCN2A gain-of-function variants. The tool guides users through key eligibility criteria including age, genetic confirmation, and seizure history, and connects eligible families to study sites in the US, Italy, Germany, and UK.
• SCN2A Global Contact Registry A patient registry platform that connects SCN2A families globally, allowing them to find nearby families, participate in research, and contribute to the SCN2A community. Includes both an open, short-form registry and a HIPAA/GDPR-compliant detailed intake form for research participation.

Quantifiable outcome

• Elsunersen ASO clinical trial shows 77% seizure reduction in children with GOF mutations
• +1 more outcomes

Segments4 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

AI capability2 records

Partnerships

Eleven partnerships are on record, tiered core and supporting.

• Unravel Biosciences, Inc.coreStrategic or Co-development Partner · 3 February 2026Drug discovery collaboration focused on preclinical research for SCN2A-related disorders caused by loss-of-function mutations. The partnership evaluates therapeutic approaches in mutation-relevant laboratory models using Unravel's AI-enabled Living Molecular Twin platform. Goal is to identify strategies that may increase functional SCN2A protein in the brain and inform future therapeutic development for LOF patients.
• Praxis Precision MedicinescoreStrategic or Co-development PartnerPartnership related to EMBRAVE 3 registrational study for Gain-of-Function SCN2A. Praxis is developing antisense oligonucleotide (ASO) PRAX-222 for early-onset SCN2A Developmental and Epileptic Encephalopathy (DEE). The foundation operates the pre-screener and refers eligible patients to study sites in US, Italy, Germany, and UK.
• COMBINEDBraincoreStrategic or Co-development PartnerNon-profit consortium of over 60 patient advocacy groups for rare genetic neurodevelopmental disorders. SCN2A Foundation is a member organization participating in biorepository collection to provide patient samples for biomarker research. Samples stored and available to researchers globally.
• Simons SearchlightsupportingOthersResearch resource partnership. Simons Searchlight is an ambitious research program creating an ever-growing database and resource network for families to contribute data and connect with research on SCN2A.
• SFARI Gene (Simons Foundation)supportingOthersResearch resource partnership. SFARI Gene is an evolving database for the autism research community centered on genes implicated in autism susceptibility, including SCN2A.
• The Jackson LaboratorysupportingOthersResearch resource partnership. JAX provides mouse models and research tools for SCN2A research, including strain 035553 for preclinical studies.
• NCBI (National Center for Biotechnology Information)supportingOthersResearch resource providing access to genetic databases including Gene ID 6326 for SCN2A and ClinVar for variant classification.
• GeneCardssupportingOthersResearch resource providing comprehensive, searchable information on the SCN2A gene integrating data from approximately 150 web sources.
• The Human Protein AtlassupportingOthersResearch resource providing information on SCN2A (ENSG00000136531) protein expression and localization in human tissues.
• Dr. Jerry KartzinelsupportingOthersMedical advisor to the foundation. Dr. Kartzinel specializes in autism and epilepsy treatment with over 30 years of experience.
• Dr. Jerry VockleysupportingOthersScientific Advisory Board member. MD, PhD, FACMG, providing genetic expertise and research guidance to foundation.

Scale indicators2 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• Loulou Foundation: Private foundation focused on CDKL5 Deficiency Disorder, a rare genetic neurodevelopmental condition. Operates a similar model of strategic therapeutic development funding, patient registry support, and academic/industry partnerships.
• Dravet Syndrome Foundation: Family-founded nonprofit funding research for Dravet syndrome, a related sodium channelopathy (SCN1A). Highly comparable in mission, founder-driven model, and patient registry/biorepository strategy to the SCN2A Foundation.
• COMBINEDBrain: A nonprofit consortium of 60+ rare genetic neurodevelopmental disorder patient advocacy groups; the SCN2A Foundation is a member organization, making COMBINEDBrain the most structurally aligned peer, with shared biorepository infrastructure and an overlapping scientific mission.
• CURE Epilepsy: Leading nonprofit dedicated to funding epilepsy research and supporting patients/families. Comparable in grantmaking model, scientific advisory structure, and patient-education focus, though broader in scope than the SCN2A Foundation.
• DEE-P Connections: Advocacy and support organization for Developmental and Epileptic Encephalopathies (DEEs), the same disease category as SCN2A-related DEE. Comparable mission, family community focus, and clinical trial navigation support.

Broad incumbents

• National Organization for Rare Disorders (NORD): The largest US rare disease umbrella advocacy organization, providing policy, research grant programs, and patient support. Comparable as an advocacy and rare disease funding entity, though operates at much larger scale and across all rare diseases.
• Child Neurology Foundation: Established nonprofit supporting children with neurological conditions and their families. A broader incumbent in the same child-neurology advocacy space, with overlapping family-support resources but a much wider disease mandate.

Emerging players

• Stoke Therapeutics: Biotech developing antisense oligonucleotide (ASO) therapies for genetic diseases including Dravet syndrome (SCN1A), a closely adjacent modality to PRAX-222 for SCN2A. Comparable as a next-generation ASO developer targeting sodium channelopathies.
• Praxis Precision Medicines: Clinical-stage biotech developing PRAX-222 (Elsunersen) for SCN2A gain-of-function DEE, the foundation's core industry partner. Listed as a peer for comparability around SCN2A therapeutic development, though operates as a for-profit entity rather than advocacy nonprofit.
• Unravel Biosciences: AI-enabled drug discovery company with an active preclinical collaboration with the SCN2A Foundation for LOF mutations. Comparable as a tech-enabled therapeutics developer operating at the intersection of rare disease and AI-driven discovery.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/scn2agene
• Facebookfacebook.com/scn2agene
• LinkedInlinkedin.com/company/scn2a-gene
• Instagraminstagram.com/scn2agene

Revenue estimate

Valuation estimate

Number of profiles

Profiles8 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about The SCN2A Foundation