What KCNT1 Epilepsy Foundation does

The KCNT1 Epilepsy Foundation is a U.S. 501(c)(3) nonprofit founded in 2019 by Seth Greenblott, along with co-founders Justin West, MD and Samantha MacMechan, to serve families affected by KCNT1-related epilepsy — an ultra-rare genetic disorder with fewer than 20 cases per million people, causing severe and often intractable seizures, severe developmental delay, and elevated mortality risk including SUDEP. The foundation is headquartered (mailing address) in Scottsdale, Arizona, operates with an all-volunteer Board of Directors and 1-10 employees, and serves a global community spanning the United States, Canada, the United Kingdom, Portugal, Germany, and Australia. There are no FDA-approved disease-modifying therapies for KCNT1-related epilepsy.

The foundation's core products are organized around three pillars: family support, research acceleration, and clinical trial readiness. Research infrastructure includes the KCNT1 International Registry (100+ enrolled patients with documented variants), a Digital Natural History Study conducted with Invitae/Ciitizen (50+ U.S. patients contributing medical records and genetic reports), and a biobank with biospecimen collection and hiPSC development through COMBINEDBrain and Van Andel Institute (since 2023). Family-facing products include the Family Contact List, Parent Ambassador Program, an annual Family and Professional Conference, multilingual educational resources (Portuguese, French, German, Spanish), and FDA Patient Listening Sessions (held April 22, 2024). Research funding is delivered through seed grants, the Penn Orphan Disease Center Million Dollar Bike Ride (raising ~$38K in 2024 and ~$39K in 2023, each unlocking ~$30K in matching), and a co-funded $100,000 Rare Epilepsy Partnership Award with CURE Epilepsy.

The foundation operates as a patient-driven, community-led organization. Revenue is generated entirely from charitable donations, fundraising events (golf tournaments, MDBR, Facebook/GoFundMe), corporate matching, eBay affiliate sales, conference sponsorships from biotech/pharma, and grants — most notably the multi-year Chan Zuckerberg Initiative Rare As One Network grant awarded in October 2024. GTM is community-led: families are reached via the website, email newsletters, Facebook (including private support groups), in-person conferences, and earned media (LA Times, Fox 32, ABC, ITV). Strategic partners span biotech (Actio Biosciences, Atalanta Therapeutics, Biogen, Praxis/UCB), academic researchers (UCL, UC Davis, CHOP), and rare disease infrastructure (NORD, CZI, COMBINEDBrain, Van Andel Institute, Penn ODC, CURE Epilepsy).

Name

KCNT1 Epilepsy Foundation

Legal name

KCNT1 Slack Epilepsy Foundation

Website

https://kcnt1epilepsy.org

Company type

Private

Founded year

2019

Operating status

Operating

Headcount range

1–10 employees

Short description

The KCNT1 Epilepsy Foundation is a Scottsdale-based 501(c)(3) nonprofit founded in 2019 that operates a patient registry, biobank, and digital natural history study to accelerate research and clinical trial readiness for the ultra-rare KCNT1-related epilepsy community worldwide.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy & Epilepsy Research Foundation

NAICS

Voluntary Health Organizations (813212)

SIC

Services-Social Services (8300)

akta.pro primary industry

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

akta.pro secondary industries

Epilepsy & Seizure Disorders (HLAKAIAB), Rare Neurology & Neurodegenerative Disorder Therapies (HLAIAIAD), Neurogenetics & Rare Neurologic Diseases (HLAKAIAO)

Keywords

• Rare disease advocacy
• Epilepsy research foundation
• Patient registry services
• Family support services
• Clinical trial readiness

Headquarters

HQ city

Scottsdale

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

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

Revenue model

1. Charitable Donations: Individual donations from supporters via PayPal Giving Fund, credit card, check, Donor Advised Funds, IRA Required Minimum Distributions (RMDs/ QCDs), corporate matching, and eBay sales through affiliate programs.
2. Fundraising Events: Revenue from events including Million Dollar Bike Ride, golf tournaments, Facebook fundraisers, and GoFundMe campaigns.
3. Conference Sponsorships: Sponsorship revenue from pharmaceutical companies and industry partners for family and professional conferences.
4. Mission-Aligned Financial Arrangements: The foundation may participate in revenue sharing, cost recovery, licensing, or other financial-return provisions through biobank partnerships, data partnerships, research collaborations, or potential spinout-related agreements.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels6 records

Core offering

The KCNT1 Epilepsy Foundation is a 501(c)(3) nonprofit that supports families affected by KCNT1-related epilepsies and accelerates research toward disease-modifying treatments. It operates a KCNT1 International Registry (>100 patients), a U.S. Digital Natural History Study with Ciitizen (>50 patients), a biobank with iPSC biospecimens through COMBINEDBrain/Van Andel Institute, a Family Contact Network connecting parents globally, a Research Funding Program issuing seed and Million Dollar Bike Ride grants, and FDA Patient Listening Sessions representing community needs to regulators.

Product overview

The KCNT1 Epilepsy Foundation offers a comprehensive suite of patient-centered services organized around three pillars: family support, research acceleration, and community building. The core offerings include a Family Contact List and Network connecting affected families worldwide; a KCNT1 Registry and Biobank (in partnership with COMBINEDBrain and Van Andel Institute) collecting patient data and biospecimens; a Digital Natural History Study with Ciitizen; a Clinical Trial Hub preparing families for trial participation; and a Research Funding Program providing seed grants and partnering on research initiatives. The Foundation also organizes Family and Professional Conferences, facilitates FDA Patient Listening Sessions, and operates a Donation Platform with multiple giving mechanisms. All services work together to accelerate discovery of disease-modifying treatments for KCNT1-related epilepsy.

Differentiator

Problem solved

Functional benefit

Products and services

• Family Contact List / Family Network A contact registry connecting families affected by KCNT1-related epilepsy. Parents and caregivers can register via online forms (available in English, Portuguese, French, German, and Spanish) to receive updates about educational events, research opportunities, and clinical trials, and to connect with other KCNT1 families globally.
• KCNT1 International Registry and Biobank A detailed, secure, and re-contactable patient database with known KCNT1 mutation variants (over 100 persons enrolled) and a biobank collecting biospecimens for iPSC development and trio genome testing, operated in partnership with COMBINEDBrain and Van Andel Institute, with brain tissue from two donors available through NIH Neurobank.
• Digital Natural History Study A U.S. digital natural history study operated in partnership with Ciitizen (Invitae) that uses patient medical records and genetic reports to characterize KCNT1-related epilepsy progression and accelerate rare disease drug development, covering more than 50 patients.
• Clinical Trial Hub Information and resources about ongoing and upcoming clinical trials for KCNT1-related epilepsy, helping families understand trial opportunities, navigate informed consent (including ASO therapy education), and prepare for participation.
• Research Funding Program Seed grants, targeted research priorities, and partnership programs funding high-impact KCNT1 research to accelerate therapeutic development, including Million Dollar Bike Ride grants (with Penn ODC matching up to $30,000) and co-funding partnerships with organizations such as CURE Epilepsy (e.g., $100,000 Rare Epilepsy Partnership Award).
• Research Library A Zotero-hosted library containing scientific publications related to KCNT1/Slack Ion Channelopathy and epilepsy research, providing access to academic literature for researchers and clinicians.
• Family and Professional Conferences Annual in-person and virtual conferences connecting KCNT1 families, clinicians, researchers, and industry partners, featuring educational presentations, clinical trial readiness guidance, networking opportunities, scientific updates, and ASO education sessions.
• Parent Ambassador Program A network of parent ambassadors who connect affected families and spread awareness of KCNT1-related epilepsy in their regions and countries (e.g., Canada, UK, Portugal), supporting community building and education efforts.
• FDA Patient Listening Sessions Facilitated sessions where KCNT1 patients, caregivers, and advocates share their experiences with the U.S. Food and Drug Administration to emphasize the urgent need for effective treatments, communicate caregiver perspectives on meaningful treatment outcomes and risk tolerance, and inform regulatory processes.

Quantifiable outcome

• Over 100 persons with KCNT1 variants enrolled in registry
• +4 more outcomes

Named customers4 records

Segments5 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

18 partnerships are on record, tiered minor and core.

• Dee-P ConnectionsminorStrategic or Co-development Partner · 30 June 2026Partnership for educational session on ASO therapies and informed consent process for clinical research, featuring Dr. Olivia Kim-McManus and parent panel.
• NORD (National Organization for Rare Disorders)coreStrategic or Co-development Partner · 15 May 2026Launch of Global KCNT1 Registry in partnership with NORD, expanding the foundation's patient registry capabilities internationally.
• Actio BiosciencescoreStrategic or Co-development Partner · 18 February 2025Foundation co-founder Dr. Justin West engaged with Actio, whose KCNT1 program ABS-1230 is advancing into preclinical testing. Actio developing oral first-in-class small molecule inhibitor for KCNT1-related epilepsy.
• Atalanta TherapeuticscoreStrategic or Co-development Partner · 31 January 2025Atalanta's ATL-201 announced as promising treatment using divalent small interfering RNA (siRNA) technology. Suppressed seizures in genetic mouse model. Advancing toward IND submission and Phase 1 clinical trial.
• Children's Hospital of Philadelphia (CHOP)coreStrategic or Co-development Partner · 7 June 2024Conference collaboration hosting first in-person meeting with 14 families from multiple countries. CHOP provided optional clinic appointments and professional presentations on clinical trial readiness.
• CURE EpilepsycoreStrategic or Co-development Partner · 20 May 2024Co-funding partnership for a $100,000 Rare Epilepsy Partnership Award, co-funding research grants to accelerate KCNT1 research priorities and double the foundation's research reach.
• UC Davis - Jill Silverman Lab (Sarah Olguin)coreStrategic or Co-development Partner · 1 January 20242024 MDBR grant for characterizing seizures in new KCNT1 G288S mouse model to understand disease mechanisms and support preclinical testing.
• Children's Hospital of Philadelphia - Dr. Jillian McKeecoreStrategic or Co-development Partner · 1 January 20242024 Seed Grant using electronic medical records and computational tools to analyze symptoms, medications, and genetic factors to inform clinical trial design.
• Quiver BiosciencecoreStrategic or Co-development Partner · 1 January 20242024 co-funded grant with CURE Epilepsy for patient-derived iPSC neuronal models to study KCNT1 function and enable therapeutic screening.
• NeuCytecoreStrategic or Co-development Partner · 1 January 20242024 Research Grant for high-throughput functional testing of KCNT1 variants to understand mutation-specific effects and evaluate therapeutic approaches.
• COMBINEDBraincoreStrategic or Co-development Partner · 1 January 2023Biobank partnership for biospecimen collection beginning in 2023, with development of induced pluripotent stem cells (hiPSCs) for research purposes.
• Van Andel InstitutecoreStrategic or Co-development Partner · 1 January 2023Partnership for biospecimen collection as part of the COMBINEDBrain biorepository initiative, supporting the foundation's biobank development.
• University College London (Dr. Rajvinder Karda Lab)coreStrategic or Co-development Partner · 1 January 2023MDBR grant awarded for RNA editing treatment project. Collaboration with Dr. Karda, Dr. Chilcott, Dr. Keegan, Dr. Antonio, Dr. McTague, and Dr. Lignani on pioneering gene therapy research.
• UCB and Praxis Precision MedicinesminorStrategic or Co-development Partner · 13 December 2022Strategic collaboration between UCB and Praxis based on Praxis' PRAX-020 program for discovery of small molecule therapeutics for KCNT1 related epilepsies.
• BiogenminorStrategic or Co-development Partner · 1 August 2022Biogen announced KCNT1 ASO (antisense oligonucleotide) development. Dr. Viet Nguyen presented at foundation research roundtables on gene-based therapy pipeline.
• Invitae CiitizencoreTechnology or Integration · 25 February 2021Partnership to launch a digital natural history study using Ciitizen's technology platform. The study collects and analyzes patient medical records and genetic reports for over 50 U.S. patients to accelerate rare disease drug development.
• NIH NeurobankminorStrategic or Co-development Partner · 1 January 2019Brain tissue from two donors available through NIH Neurobank for KCNT1 research.
• Penn Orphan Disease CentercoreStrategic or Co-development Partner · 1 January 2019Annual Million Dollar Bike Ride partnership. The ODC matches funds raised (up to $30,000) and distributes grants to researchers worldwide with no overhead. Raised nearly $38,000 in 2024 unlocking $30,000 match.

Scale indicators10 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• CURE Epilepsy: Established nonprofit funding epilepsy research broadly, with co-funding partnership with KCNT1 Epilepsy Foundation on the $100K Rare Epilepsy Partnership Award. Highly comparable as a patient-driven funder in the epilepsy research space.
• Epilepsy Foundation: Largest US epilepsy patient advocacy organization with broad research funding, family support, and FDA engagement programs. Comparable operating model but at much greater scale across all epilepsies, not just KCNT1.
• Child Neurology Foundation: Broader patient/professional organization supporting families affected by pediatric neurologic conditions including rare genetic epilepsies. Comparable in family support and clinician engagement mission.

Direct peers

• SLC6A1 Connect: Family-driven 501(c)(3) for ultra-rare genetic neurological disorder with patient registry, natural history study, research funding, and active biotech partnerships. Same playbook as KCNT1 Foundation.
• STXBP1 Foundation: Parent-founded 501(c)(3) for ultra-rare genetic encephalopathy with registry, biobank, family conferences, research grants, and gene therapy partnerships. Near-identical operating model and scale to KCNT1 Foundation.
• National Organization for Rare Disorders (NORD): Umbrella rare disease nonprofit that hosts patient registries and partners with disease-specific foundations; KCNT1 Epilepsy Foundation is actively partnering with NORD to launch its global registry. Directly comparable in registry infrastructure and grantmaking.
• COMBINEDBrain: Nonprofit consortium advancing therapies for ultra-rare neurodevelopmental disorders, partnered with KCNT1 Foundation for biobank/biorepository since 2023. Directly comparable patient-data and biospecimen infrastructure model.
• Dravet Syndrome Foundation: Disease-specific nonprofit for another severe genetic epilepsy with similar mission structure: patient registry, research grants, family conferences, biotech partnerships, and FDA engagement. Closest analog in scale and operating model.
• SCN8A Union / Wishes for Elliott: Family-led nonprofit for SCN8A-related epilepsy, another ion channelopathy with analogous patient registry, family support, and biotech partnership approach to KCNT1.
• PCDH19 Alliance: Small parent-founded nonprofit supporting research and families affected by PCDH19-related epilepsy, a similarly ultra-rare genetic seizure disorder. Comparable scale, mission, and community-led model.

Market position

Strengths5 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/@KCNT1EpilepsyFoundation
• Facebookfacebook.com/kcnt1epilepsy
• Xx.com/KCNT1_Epilepsy
• LinkedInlinkedin.com/company/kcnt1epilepsyfoundation

Compliance3 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles5 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about KCNT1 Epilepsy Foundation