Friends of FSH Research

What Friends of FSH Research does

Friends of FSH Research is a Seattle-area 501(c)(3) nonprofit (EIN 86-1108537), founded in 2004 and headquartered in Kirkland, Washington, that actively manages a portfolio of research grants targeting Facioscapulohumeral Muscular Dystrophy (FSHD). The organization funds academic and industry researchers across drug discovery, biomarkers, outcome measure validation, and clinical trial readiness, prioritizing therapeutic approaches aimed at the DUX4 protein. Its supported research surface spans spatial transcriptomics in FSHD skeletal muscle, AI-guided DUX4 inhibitor screens (Talus Bioscience's TF-Scan and Strategian AI), epigenetic activator technology (3R-ON via Histone Therapeutics), human embryonic stem cell disease models (Genea Biocells), and a mini-pig FSHD disease model at the Tapscott lab.

The business model is grant-making funded by charitable donations, fundraising auctions, and corporate sponsorships rather than commercial product sales. Distribution channels center on a competitive grant application process for researchers and diversified giving instruments for donors (online donations, stocks, QCD, DAF). The organization also operates research infrastructure including the FSHD Clinical Trial Research Network (CTRN) and supports free FSHD genetic testing through the myfshd.org partnership and the National FSHD Registry. The MOVE FSHD natural history study has enrolled 480+ participants across North America, the UK, continental Europe, and Asia.

Governance comprises a Board of Directors (including President Terry Colella, George Shaw, and Amanda Rickard) supported by a scientific advisory board, with no parent company or institutional investment structure. The organization is certified by Guidestar with a Gold Seal of Transparency, holds the operating name Pacific Northwest Friends of FSH Research, and reports cumulative grant funding of more than $10.7 million. Annual operating revenue is not separately disclosed.

Name

Friends of FSH Research

Legal name

Friends of FSH Research

Website

https://fshfriends.org

Company type

Private

Founded year

2004

Operating status

Operating

Short description

Friends of FSH Research is a Kirkland, Washington nonprofit founded in 2004 that funds FSHD (Facioscapulohumeral Muscular Dystrophy) research worldwide, having awarded over $10.7 million in grants to academic and industry scientists pursuing DUX4-targeted therapeutics and clinical trial readiness.

Ownership category

akta.pro rank

Product category

Muscular Dystrophy Research Funding

NAICS

Grantmaking Foundations (813211)

akta.pro primary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

akta.pro secondary industry

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

Keywords

• Muscular dystrophy research
• Nonprofit research grants
• FSHD drug discovery
• Clinical trial networks
• Biomedical research funding

Headquarters

HQ city

Kirkland

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Others, Personnel, Operations, Marketing or Sales

Distribution channels3 records

Marketing channels8 records

Core offering

Friends of FSH Research funds scientific research and drug-discovery efforts aimed at developing treatments and cures for Facioscapulohumeral Muscular Dystrophy (FSHD). It offers competitive research grants (pilot, multi-year, FlexFund, and travel grants) to academic and industry investigators, supports clinical trial infrastructure through the FSHD Clinical Trial Research Network (CTRN), and coordinates free FSHD genetic testing through myfshd.org. To date, the organization has awarded more than $10.7 million in research funding across biomarker discovery, DUX4 mechanism studies, and therapeutic development.

Product overview

Friends of FSH Research is a non-profit organization (accelerating research since 2004) that operates a portfolio of research funding programs rather than a commercial product platform. Its offerings include: an FSHD research grant program funding scientific investigations into treatments and cures; free genetic testing coordination through myfshd.org; a Clinical Trial Research Network (CTRN) with international sites; a National FSHD Registry for patient recruitment; researcher resources including grant types and application support; and events/fundraising programs. The organization connects researchers, patients, and donors to advance FSHD therapeutic development. Over $10.7 million has been funded to date.

Differentiator

Problem solved

Functional benefit

Products and services

• FSHD Research Grant Program Competitive grant program funding scientific research into treatments and cures for FSHD, including pilot grants, multi-year project grants, FlexFund grants, and travel grants. More than $10.7 million has been funded to date.
• Free FSHD Genetic Testing Free genetic testing service for individuals with suspected FSHD, delivered through the myfshd.org partnership to remove barriers to diagnosis.
• FSHD Clinical Trial Research Network (CTRN) Multi-site clinical trial readiness network with international sites supporting FSHD therapeutic development through standardized protocols and trial recruitment support.
• National FSHD Registry Patient registry based in Rochester, NY aggregating genetic and clinical information to support FSHD trial recruitment and research.
• Events and Fundraising Program Annual auctions (including Auction 2027), corporate sponsorship opportunities, shop-for-research, and donation programs raising funds for FSHD research.

Quantifiable outcome

• Over $10.7 million funded to accelerate FSHD research
• +2 more outcomes

Segments2 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature6 records

Partnerships

18 partnerships are on record, tiered core and minor.

• FSHD Canada FoundationcoreStrategic or Co-development PartnerLong-standing co-funding partnership where both organizations match funding on collaborative research projects to accelerate FSHD understanding. Jointly funded projects including serum biomarkers research and cyclic peptide inhibitors of DUX4.
• myfshd.orgcoreOthersPartnership to support free FSHD genetic testing for individuals through myfshd.org website, removing barriers to diagnosis for patients.
• European Neuromuscular Centre (ENMC)coreStrategic or Co-development PartnerCo-wrote grant to convene global FSHD registry stakeholders to discuss expanding core data collection standards. Included representatives from Treat NMD, FSH Society, and patient advocates to establish global registry framework.
• University of Minnesota - Dr. Michael Kyba LabcoreStrategic or Co-development PartnerMajor research partner conducting large-scale DUX4 inhibitor screening experiments and developing anti-DUX4 therapeutics. Kyba lab has screened millions of compounds for DUX4 inhibitors.
• Leiden University - Dr. Silvère van der MaarelcoreStrategic or Co-development PartnerLeading FSHD research pioneer awarded €1 million from Princess Beatrix Fund for pioneering work in FSHD research. Collaborates on understanding disease mechanisms and therapeutic development.
• Genea BiocellsminorStrategic or Co-development PartnerAustralian biotech developing human embryonic stem cell lines for FSHD and next-generation screening platforms. Supported development of engineered ESC line that reports DUX4 activity for worldwide research use.
• Talus BiosciencecoreStrategic or Co-development PartnerDeveloping TF-Scan technology and Strategian AI platform for AI-guided DUX4 inhibitor screening. Phase I support from Friends of FSH Research built experimental foundation for DUX4 inhibitor discovery screens.
• Histone TherapeuticscoreStrategic or Co-development PartnerDeveloping 3R-ON technology, a first-of-its-kind epigenetic activator tool designed to activate silenced genes. Research focuses on Adiponectin therapeutic target and DUX4 suppression via LRIF1 protein.
• Fulcrum TherapeuticscoreStrategic or Co-development PartnerDeveloping losmapimod for FSHD treatment. Supported Phase 2b ReDUX4 clinical trial and Phase 3 REACH trial. Received FDA Orphan Drug Designation for losmapimod in FSHD.
• University of Rochester - Dr. Rabi TawilcoreStrategic or Co-development PartnerCo-leader of MOVE FSHD natural history study and FSHD Clinical Trial Research Network (CTRN). Supports National Registry for FSHD Research and trial recruitment optimization.
• Fred Hutchinson Cancer Research Center - Dr. Stephen Tapscott LabcoreStrategic or Co-development PartnerCore research partner studying DUX4 regulation, molecular markers of FSHD, and pig animal models for disease recapitulation. Host institution for multiple FSH Research Scholars.
• Acceleron PharmaminorStrategic or Co-development PartnerDeveloping ACE-083 (ligand trap for TGF-β superfamily) for FSHD treatment. Supported Phase 2 clinical trial with Dr. Jeffrey Statland as clinical expert.
• Dyne TherapeuticsminorStrategic or Co-development PartnerAccelerating programs in FSHD targeting genetic cause of the disease. Created World FSHD Day awareness content.
• University of Washington - Multiple LabscoreStrategic or Co-development PartnerMultiple research collaborations including Dr. Leo Wang (clinical trials), Dr. Daniel Miller (biomarkers), and Dr. Peter Jones (epigenetic diagnostics). Supports clinical trial support infrastructure and improved FSHD diagnostics.
• Treat NMDminorStrategic or Co-development PartnerInternational neuromuscular disease network collaborating on global FSHD registry framework standards and data collection harmonization.
• FSH SocietyminorStrategic or Co-development PartnerCollaborated on Voice of the Patient Forum for Drug Development meeting. Partner on MRI studies and patient engagement initiatives.
• University of Southampton - Dr. Ali TavassoliminorStrategic or Co-development PartnerDeveloped novel screening platform for DUX4 inhibitor discovery. Collaboration with Dr. Kyba to test tens of millions of potential small molecules.
• NIH Chemical Genomics Center (NCATS)minorStrategic or Co-development PartnerCollaboration for high throughput small molecule screening to identify compounds capable of increasing repressive chromatin structures for FSHD therapy.

Scale indicators3 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• FSH Society: FSH Society is the other major US-based nonprofit exclusively focused on FSHD research, advocacy, and patient support. It is the most direct peer — both organizations compete for the same patient-donor base while occasionally collaborating on Voice of the Patient Forums and registry initiatives.
• FSHD Canada Foundation: Canadian FSHD-focused nonprofit that operates a long-standing matched co-funding partnership with Friends of FSH Research. It is a peer and partner simultaneously, serving the same disease mission and competing for North American FSHD donor dollars.
• Myotonic Dystrophy Foundation: The Myotonic Dystrophy Foundation is a US nonprofit focused exclusively on myotonic dystrophy research and patient support. It is a peer in the muscle-wasting disease-specific research-funding niche with comparable scope and operating model.
• ALS Association: The ALS Association is a major US disease-specific nonprofit funding research, patient services, and advocacy for amyotrophic lateral sclerosis. It is a peer in the single-disease neuromuscular research grantmaking model with a comparable donor-driven funding structure.
• Charcot-Marie-Tooth Association: CMTA is a US nonprofit funding research into Charcot-Marie-Tooth disease, another rare inherited neuromuscular disorder. It is a peer in disease-specific rare-disease research grantmaking and clinical-trial-readiness advocacy.
• Parent Project Muscular Dystrophy (PPMD): PPMD is the leading US nonprofit focused exclusively on Duchenne muscular dystrophy. It is a peer in single-disease research grantmaking and clinical-trial-readiness infrastructure, serving as a useful operational comparator for FSHD-focused organizations.
• Treat NMD: Treat NMD is an international neuromuscular-disease research network coordinating patient registries, care standards, and trial-readiness infrastructure across diseases including FSHD, Duchenne, SMA and others. It is both a peer and an operational partner to the subject organization.

Broad incumbents

• Cystic Fibrosis Foundation: CFF is the archetypal disease-specific nonprofit that has translated donor dollars into approved therapies (e.g., Trikafta) through sustained research funding and biotech partnerships. It is a model peer for how a focused nonprofit can drive an entire therapeutic pipeline.
• Muscular Dystrophy Association (MDA): MDA is the largest US neuromuscular-disease nonprofit, funding research across FSHD, Duchenne, ALS, myotonic dystrophy and related conditions. It is a broad incumbent in the same donor-funded research-grantmaking space but with a much larger portfolio and brand.

Regional players

• European Neuromuscular Centre (ENMC): ENMC is a Netherlands-based nonprofit that convenes international workshops and consortia on neuromuscular diseases, including FSHD. It is a peer in the neuromuscular research-funding ecosystem but operates primarily in Europe.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key highlights7 records

Customer concentration

• Xx.com/fshresearch
• Facebookfacebook.com/FSHresearch
• LinkedInlinkedin.com/company/fshfriends
• Instagraminstagram.com/fshfriendsorg
• Pinterestpinterest.com/fshfriends

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Funding overview

Funding rounds

Investors

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M&A

Investments1 record

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Frequently asked questions about Friends of FSH Research