Foundation to Eradicate Duchenne

What Foundation to Eradicate Duchenne does

The Foundation to Eradicate Duchenne (FED) is a 501(c)(3) nonprofit organization established in 2002 and headquartered in Alexandria, Virginia, with staff headcount of 11–50. FED operates a "seed funding" model, raising approximately $500,000 annually through donations, corporate matching gift programs, direct mail, and recurring fundraising events — the Rock n Roll Half Marathon, FORE Duchenne golf tournament, and Dining Away Duchenne celebrity chef gala. All proceeds are directed to translational research, clinical trial infrastructure, and therapeutic development for Duchenne muscular dystrophy (DMD), a rare X-linked genetic disease affecting roughly 1 in 3,500–4,000 boys and typically fatal before the fourth decade of life.

FED's core activity is grant-making and venture philanthropy rather than product development. It played a foundational role in establishing the Cooperative International Neuromuscular Research Group (CINRG) — an international academic clinical trial network that has enrolled over 1,500 patients and conducted the largest natural history study of DMD. FED also supported preclinical mdx mouse testing infrastructure (later spun off to AGADA BioSciences in 2013) and was a participant in the AGAMREE (vamorolone) development program from inception, contributing to AGAMREE's October 2023 FDA approval and December 2023 EMA approval — the first pharmacological therapy for DMD approved by both regulators. FED additionally holds an ownership stake in TRINDS LLC, the clinical trial coordinating center that operationalized the vamorolone trials.

FED's go-to-market is community-led: event-driven fundraising combined with direct mail, organic social (Facebook, Twitter), and corporate matching programs. It operates an international partnership network spanning over a dozen nonprofit foundations (Muscular Dystrophy Association, Parent Project Muscular Dystrophy, Joining Jack, CureDuchenne, DuchenneUK, Defeat Duchenne Canada, Save Our Sons, Ryan's Quest, Pietro's Fight, Michael's Cause, Alex's Wish, Action Duchenne, Duchenne Research Fund), academic institutions (Children's National, Binghamton University, University of Pittsburgh, Newcastle University), clinical trial coordinating centers (CINRG, TRINDS), biotech (ReveraGen, Santhera, Actelion, Idorsia), and government funders (US DOD CDMRP, NIH/NCATS/NINDS/NIAMS, European Commission Horizons 2020). Under venture philanthropy arrangements, FED will receive proceeds from future AGAMREE sales, providing a non-donation revenue stream tied to commercial success of the therapy it helped underwrite.

Name

Foundation to Eradicate Duchenne

Legal name

Foundation to Eradicate Duchenne

Website

https://duchennemd.org

Company type

Private

Founded year

2002

Operating status

Operating

Headcount range

11–50 employees

Short description

Foundation to Eradicate Duchenne (FED) is a 501(c)(3) nonprofit established in 2002 that raises approximately $500,000 annually to provide seed funding for Duchenne muscular dystrophy research, clinical trial infrastructure, and therapeutic development across an international partnership network.

Ownership category

akta.pro rank

Product category

Rare Disease Research Foundation

NAICS

Grantmaking Foundations (813211), Voluntary Health Organizations (813212), Grantmaking and Giving Services (81321)

akta.pro primary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

akta.pro secondary industries

International Grantmaking & Development Foundations (BPAGAKAH), Private Foundations (BPAGAKAA)

Keywords

• Duchenne research funding
• Muscular dystrophy research
• Nonprofit medical foundation
• Translational research grants
• Rare disease therapeutics

Headquarters

HQ city

Clifton

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Operations, Marketing or Sales, Personnel, Others

Revenue model

1. Donations and Grants: The foundation raises approximately $500,000 per year primarily through donations, grants, and fundraising events. All proceeds are designated for cutting-edge DMD research, clinical trials, and treatment development.

Go-to-market motion1 record

Distribution channels1 record

Marketing channels6 records

Core offering

Foundation to Eradicate Duchenne is a 501(c)(3) nonprofit that raises approximately $500,000 per year to provide seed funding and venture philanthropy toward translational research and clinical trials for Duchenne Muscular Dystrophy (DMD). It supports academic investigators and biotech partners such as ReveraGen BioPharma and helps fund clinical research infrastructure including the CINRG network, with its work contributing to the FDA approval of vamorolone (AGAMREE). The Foundation also runs marquee fundraising events — the Rock 'n' Roll Half Marathon team, the FORE Duchenne Golf Tournament, and the Dining Away Duchenne gala — to sustain its research pipeline.

Product overview

Foundation to Eradicate Duchenne is a 501c(3) nonprofit organization established in 2002 that raises approximately $500,000 per year to support translational research in Duchenne Muscular Dystrophy (DMD). Rather than offering commercial products or services, the foundation operates as a grant-making organization focused on seed funding for key infrastructure developments and therapeutic research projects. FED's activities include hosting fundraising events (the Rock n Roll Half Marathon, FORE Duchenne golf tournament, and Dining Away Duchenne gala) and providing financial support to DMD research initiatives including drug development programs, clinical trial networks, and exon-skipping therapies.

Differentiator

Problem solved

Functional benefit

Products and services

• DMD Research Seed Funding Grants Seed-stage grants and venture project management provided to academic investigators and biotech firms to advance translational research and clinical trials for Duchenne Muscular Dystrophy therapeutics.
• Vamorolone (AGAMREE) Development Support Foundation-supported collaborative program with ReveraGen BioPharma that contributed to the development and FDA approval of vamorolone (AGAMREE) as a steroid therapy for Duchenne Muscular Dystrophy.
• Rock 'n' Roll Half Marathon Fundraising Team Annual signature fundraising event and peer-to-peer fundraising team for the Rock 'n' Roll Half Marathon, where participants register and raise pledges for the Foundation.
• FORE Duchenne Golf Tournament Annual golf tournament event hosted by the Foundation that generates revenue through registrations, sponsorships, and donations to fund DMD research.
• Dining Away Duchenne Gala Annual gala fundraising event hosted by the Foundation that gathers donors and sponsors to raise funds for DMD research programming.

Named customers5 records

Segments1 record

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

23 partnerships are on record, tiered core and minor.

• ReveraGen BioPharma Inc.coreStrategic or Co-development Partner · 26 October 2023FED has been a participant in the AGAMREE (vamorolone) project since the beginning. This partnership contributed to the first DMD therapy approved by both EMA (December 2023) and FDA (October 2023). Under venture philanthropy models (shared risk, shared benefit), FED provided financial support for development activities. Proceeds from future sales of AGAMREE will be shared with over a dozen nonprofit foundations including FED.
• Cooperative International Neuromuscular Research Group (CINRG)coreStrategic or Co-development PartnerInternational academic clinical trial network founded in 2000 focused on pediatric neuromuscular disease. FED was instrumental in establishing CINRG beginning in 2001. CINRG has enrolled over 1,500 patients and conducted the largest natural history study of DMD (DNHS with 440 patients), with data used to benchmark drug effects by multiple pharmaceutical companies.
• TRINDScoreStrategic or Co-development PartnerClinical trial coordinating center for CINRG network. FED invested in TRINDS LLC as part of its infrastructure support for DMD research. TRINDS coordinates the vamorolone clinical trials.
• Children's National HospitalminorStrategic or Co-development PartnerChildren's National was the initial home for early vamorolone research. FED supported the initiation of a centralized mdx testing facility at Children's National Medical Center, which later spun off to AGADA BioSciences in 2013.
• Santhera PharmaceuticalscoreStrategic or Co-development PartnerSanthera holds exclusive license to vamorolone for all indications worldwide. Partnered with ReveraGen for development and commercialization of AGAMREE for DMD treatment. Plans to commercialize through own organization in US and main European markets.
• Parent Project Muscular Dystrophy (PPMD)coreStrategic or Co-development PartnerMajor US DMD foundation that partnered with FED for the 2026 Advocacy Leadership Awards. Both foundations participate in public/private partnerships supporting DMD research and therapy development.
• TREAT-NMDcoreStrategic or Co-development PartnerInternational network for neuromuscular disease research. FED collaborated with TREAT-NMD and Children's National Medical Center on consensus SOPs for measurement of therapeutic effects in mdx mouse model of DMD.
• AGADA BioSciencesminorStrategic or Co-development PartnerCentralized mdx testing facility that was supported by FED and later spun off from Children's National Medical Center academic setting in 2013.
• Muscular Dystrophy Association (USA)coreStrategic or Co-development PartnerMajor US nonprofit foundation that provided financial support for vamorolone development under venture philanthropy model.
• Joining Jack (UK)minorStrategic or Co-development PartnerUK foundation that aided vamorolone development for DMD and lobbied for UK Early Access to Medicines Scheme.
• DuchenneUKminorStrategic or Co-development PartnerUK foundation that helped develop UK Early Access to Medicines Scheme and supported PIM designation for vamorolone.
• Action DuchenneminorStrategic or Co-development PartnerUK foundation that aided vamorolone development for DMD.
• Alex's WishminorStrategic or Co-development PartnerUK foundation supporting vamorolone development for DMD.
• Duchenne Research FundminorStrategic or Co-development PartnerUK foundation supporting vamorolone development for DMD.
• Save Our SonsminorStrategic or Co-development PartnerInternational nonprofit foundation that provided financial support for vamorolone development.
• CureDuchenneminorStrategic or Co-development PartnerNonprofit foundation supporting vamorolone development for DMD.
• Ryan's QuestminorStrategic or Co-development PartnerNonprofit foundation supporting vamorolone development for DMD.
• Pietro's FightminorStrategic or Co-development PartnerNonprofit foundation supporting vamorolone development for DMD.
• Michael's CauseminorStrategic or Co-development PartnerNonprofit foundation supporting vamorolone development for DMD.
• Defeat Duchenne CanadaminorStrategic or Co-development PartnerCanadian nonprofit foundation supporting vamorolone development for DMD.
• Binghamton University - State University of New YorkminorStrategic or Co-development PartnerAcademic partner for vamorolone research, home to Dr. Kanneboyina Nagaraju (co-founder of ReveraGen) as Dean of School of Pharmacy and Pharmaceutical Sciences. Supported preclinical research through TREAT-NMD collaboration.
• University of PittsburghcoreStrategic or Co-development PartnerKey academic partner for vamorolone clinical trials. Dr. Paula Clemens served as Study Chair for Phase 2a and 2b clinical trials. Also hosts mobile health outcomes research (Roxanna Bendixen) using ActiGraph wrist monitors.
• Newcastle University (UK)minorStrategic or Co-development PartnerUK academic institution that received European Commission Horizons 2020 grant for vamorolone clinical trial program. One of six UK sites for pivotal vamorolone trial.

Scale indicators1 record

Recent moves6 records

Expansion highlights5 records

Regional players

• Duchenne UK: Duchenne UK is a UK DMD research charity that helped secure PIM designation and Early Access to Medicines Scheme status for vamorolone, in collaboration with FED. It is a regional peer operating the same translational-research funding model in a different geography.
• Action Duchenne: Action Duchenne is a UK-registered DMD charity that co-financed AGAMREE development with FED. It is comparable in mission (funding research, supporting families) and consortium participation, but its fundraising base and policy focus are UK-centric.
• Save Our Sons: Save Our Sons is an Australian DMD foundation listed as a co-financier of the AGAMREE program alongside FED. It mirrors FED's translational-research funding model and venture-philanthropy approach but is regionally focused on Australia.
• Defeat Duchenne Canada: Defeat Duchenne Canada is a Canadian nonprofit supporting vamorolone development in the same FED-led venture-philanthropy consortium. It is a regional peer with identical mission and funding mechanism but geographically concentrated in Canada.
• Joining Jack: Joining Jack is a UK DMD family foundation co-funding AGAMREE and the broader venture-philanthropy consortium alongside FED. It pursues the same translational-research funding mission but is anchored in UK advocacy and access pathways (e.g., Early Access to Medicines Scheme).
• Duchenne Research Fund: Duchenne Research Fund is a UK foundation that, like FED, provided financial support under the AGAMREE venture-philanthropy framework. It is comparable in its single-disease focus on DMD but operates primarily in the UK donor and research ecosystem.

Emerging players

• Ryan's Quest: Ryan's Quest is a smaller US DMD family foundation that co-funded AGAMREE under the same shared-risk/shared-benefit framework as FED. It has a narrower operational footprint than FED but is highly comparable as a translational-research grantmaker for DMD therapeutics.

Broad incumbents

• Muscular Dystrophy Association (MDA): MDA is the largest US muscular-dystrophy nonprofit, co-funding AGAMREE under the same venture-philanthropy model as FED. Unlike FED, MDA covers all neuromuscular diseases and operates a much larger research, clinical care, and lobbying footprint, making it a broad incumbent peer in the same funding category.

Direct peers

• CureDuchenne: CureDuchenne is a US nonprofit dedicated to funding DMD research and is listed alongside FED as a co-financier of the AGAMREE/vamorolone program. It targets the same patient population, uses a similar venture-philanthropy toolkit, and competes for the same donor and biotech-partner mindshare.
• Parent Project Muscular Dystrophy (PPMD): PPMD is the leading US DMD patient-advocacy and research-funding foundation and a direct peer: it co-funds the same venture-philanthropy consortia (AGAMREE), partners with FED on the 2026 Advocacy Leadership Awards, and channels grants to the same academic and biotech research infrastructure for DMD therapeutics.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks4 records

Key highlights7 records

Customer concentration

• Xx.com/duchennemd
• Facebookfacebook.com/eradicateduchenne
• LinkedInlinkedin.com/company/foundation-to-eradicate-duchenne-inc

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 Foundation to Eradicate Duchenne