ForeBatten Foundation

What ForeBatten Foundation does

ForeBatten Foundation is a 501(c)(3) nonprofit organization (EIN 82-2661656) founded in 2017 by Karen and David Kahn after their twin daughters Amelia and Makenzie were diagnosed with juvenile Batten disease (CLN3), a rare and fatal lysosomal storage disorder affecting roughly 1.2 per 100,000 births. The foundation funds translational CLN3 research, supports affected families, and operates family-facing grants through a partnership with BDSRA.

The organization's scientific portfolio is concentrated on antisense oligonucleotide (ASO) therapeutics. Its lead asset, Zebronkysen (FBF-001), is a personalized ASO drug designed for the twins' specific CLN3 c.569dupG mutation; it received FDA IND clearance under the N-of-1 Individualized ASO Product Guidance on May 24, 2024, with treatment initiated in June 2024 through UNC Health. A second program, Project Four Leaf Clover, targets the common exons 7-8 deletion present in approximately 85% of CLN3 patients and is being advanced with the Hastings Laboratory at the University of Michigan. The foundation also funds small-molecule, gene-therapy, and biomarker work through Weimer Lab (Sanford Research), Centre Armand-Frappier, University of Rochester, Washington University, and others.

Commercially, ForeBatten operates as a donation- and event-driven nonprofit with no product revenue. Funding streams include individual and corporate tax-deductible donations, an online merchandise store ($10 per item directed to research), and signature fundraising events such as Take A Swing ForeBatten ($1.4M raised in October 2022) and the Sweet 16 Auction & Fundraiser (March 2026). Since inception the foundation has invested more than $8 million in Batten research, and it relies on a small staff (1-10 employees) headquartered in Chapel Hill, North Carolina, supported by an executive director, three board members, and a scientific advisory board.

Name

ForeBatten Foundation

Legal name

ForeBatten Foundation

Website

https://forebatten.org

Company type

Private

Founded year

2017

Operating status

Operating

Headcount range

1–10 employees

Short description

ForeBatten Foundation is a 501(c)(3) nonprofit founded in 2017 that funds CLN3 juvenile Batten disease research, develops personalized ASO therapeutics including Zebronkysen, and supports affected families through grants, events, and donations.

Ownership category

akta.pro rank

Product category

Nonprofit Rare Disease Research Foundation

NAICS

Voluntary Health Organizations (813212), Grantmaking Foundations (813211)

SIC

Services-Misc Health & Allied Services, Nec (8090), Services-Commercial Physical & Biological Research (8731)

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 research funding
• Batten disease therapeutics
• Antisense oligonucleotide therapy
• Nonprofit medical foundation
• Clinical trial funding

Headquarters

HQ city

Chapel Hill

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations: Tax-deductible charitable donations from individuals, corporations, and organizations supporting Batten disease research. As a 501(c)(3) organization (EIN 82-2661656), all contributions are tax-deductible.
2. Merchandise Sales: Sale of branded merchandise including apparel and accessories. $10 of every item sold is directed toward funding medical research.
3. Fundraising Events and Auctions: Annual fundraising events including the Take A Swing ForeBatten golf auction and Sweet 16 Auction & Fundraiser. Features curated online auctions offering luxury travel, golf experiences, and exclusive items.
4. Foundation Financials: Publicly available Form 990 filings for years 2019-2024 demonstrating transparency and financial accountability as a nonprofit organization.

Pricing tiers

Go-to-market motion2 records

Distribution channels3 records

Marketing channels6 records

Core offering

ForeBatten Foundation is a 501(c)(3) nonprofit that funds Batten disease research, supports affected families, and develops personalized and common-variant antisense oligonucleotide therapies (notably Zebronkysen and Project Four Leaf Clover). The foundation channels donor contributions and event proceeds into grants to research labs, family-support programs via the Fore The Journey Fund, and clinical investigation of CLN3 therapeutics.

Product overview

ForeBatten Foundation is a 501(c)(3) nonprofit organization founded in 2017 by the Kahn family, focused on funding research, providing support, and generating hope for the Batten disease community. The foundation offers a unified portfolio of initiatives: Zebronkysen (FBF-001) is a personalized ASO drug treatment developed for the twins' specific CLN3 mutation, currently in clinical investigation; Project Four Leaf Clover is a broader research program targeting the common CLN3 mutation affecting 85% of Batten patients; and Bad Batten - The Unwanted Guest is an awareness video series documenting patient experiences. The foundation also operates fundraising events (Take A Swing ForeBatten), an online merchandise store, and maintains a website providing disease information, research updates, and donation capabilities. Since its founding, the foundation has invested more than $8 million in Batten disease research.

Differentiator

Problem solved

Functional benefit

Brands

• Bad Batten: A video series and podcast giving Amelia and Makenzie a voice against Batten disease, providing insight into living with the condition.
• Project Four Leaf Clover
• Zebronkysen

Products and services

• Zebronkysen (FBF-001)
• Project Four Leaf Clover
• Take A Swing ForeBatten
• ForeBatten Store
• Bad Batten - The Unwanted Guest
• Fore The Journey Fund

Quantifiable outcome

• More than $8 million invested in Batten disease research since 2017
• +3 more outcomes

Named customers2 records

Segments3 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

16 partnerships are on record, tiered core and supporting.

• Weimer Lab - Sanford ResearchcoreStrategic or Co-development PartnerLed by Dr. Jill Weimer, identifying potential molecular therapies for the treatment of CLN3 Batten disease. Testing antisense oligonucleotides, small molecule, and gene therapy approaches in animal models.
• Hastings Laboratory - Rosalind Franklin UniversitycoreStrategic or Co-development PartnerLed by Dr. Michelle Hastings, developing antisense oligonucleotides for the treatment of CLN3. Discovered Zebronkysen and Project Four Leaf Clover ASO therapies.
• University of Michigan Center for RNA MedicinecoreStrategic or Co-development PartnerDeveloped personalized RNA therapeutic (Zebronkysen) used to treat twins with ultra-rare CLN3 Batten disease. Researchers developed the ASO drug for the twins' unique mutation.
• UNC HealthcoreStrategic or Co-development PartnerUNC fast-tracked personalized treatment study for twins with ultra-rare genetic disorder. First UNC Health personalized ASO treatment for Batten disease.
• BDSRA (Batten Disease Surrogate Research Association)coreStrategic or Co-development PartnerJoint collaboration providing Batten families with grants to bring much needed smiles through Fore The Journey Fund. Family support partnership.
• Dr. Stephane Lefrancois - Centre Armand-Frappier Sante BiotechnologiesupportingTechnology or IntegrationCharacterizing the molecular function of CLN3 to identify novel therapeutic targets using cell-based assays for assessing protein-protein interactions.
• Dr. Ruchira Singh - University of Rochester Medical CentersupportingTechnology or IntegrationUnderstanding vision loss in CLN3 Batten disease and developing patient-specific and cell-type specific cell lines for testing CLN3 function.
• Dr. Jon Cooper - Washington University School of MedicinesupportingTechnology or IntegrationDefining the onset and progression of disease within the enteric and peripheral nervous systems in juvenile Batten disease.
• Dr. Jon Brudvig - Weimer LabsupportingTechnology or IntegrationDevelopment of translatable biomarkers for CLN3 Batten disease.
• David M. Mueller, Ph.D - Rosalind Franklin University of Medicine & SciencesupportingTechnology or IntegrationResearch on structure, function, and partners of CLN3 Batten disease protein.
• May Khanna, Ph.D - New York UniversitysupportingTechnology or IntegrationTargeting CLN3 protein-protein interactions for Batten disease therapeutics.
• Dr. David A. Pearce - Sanford ResearchsupportingTechnology or IntegrationExecutive Vice President of Innovation and Research at Sanford. Leading juvenile Batten disease research since 1997. Over 100 research papers on Batten disease.
• Dr. Denia Ramirez-Montealegre - University of Tennessee Medical CentersupportingTechnology or IntegrationPediatric Neurology. Trained in Costa Rica with MPH and PhD in Genetics. Provides clinical care for children with Batten disease.
• Dr. Michael C. Kruer - Phoenix Children's HospitalsupportingTechnology or IntegrationPediatric neurologist and developmental pediatrician. Scientific advisory board member. Research on neurodevelopmental and neurodegenerative disorders.
• Russell Gotschall - M6P TherapeuticssupportingTechnology or IntegrationVice President of Research and Development. Scientific advisory board member with over 25 years of drug discovery experience in rare diseases.
• Gavin Malenfant - ProMIS NeurosciencessupportingTechnology or IntegrationChief Operating Officer. Scientific advisory board member with 30 years of biopharmaceutical experience in rare diseases.

Scale indicators5 records

Recent moves6 records

Expansion highlights5 records

Market position

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/@forebatten
• Facebookfacebook.com/forebatten
• Instagraminstagram.com/forebatten
• LinkedInlinkedin.com/company/forebatten-foundation

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles11 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about ForeBatten Foundation