FSHD Global
FSHD Global Research Foundation is an Australian non-profit (founded 2007, Sydney) functioning as the country's peak body for Facioscapulohumeral Muscular Dystrophy, funding medical research across 11 countries and operating the world-first Cure FSHD patient registry with AI-powered whole-body MRI analytics and Clinical Trial Passport to accelerate global FSHD therapy development.
- Company typePrivate
- Founded2007
- HeadquartersSydney, Australia
- Headcount1–10
- GTM typeB2C
- OfferingServices
What FSHD Global does
FSHD Global Research Foundation Ltd (operating as FSHD Global) is an Australian-registered non-profit charity founded in 2007 by Bill Moss AO, headquartered in Sydney. Its stated mission is to fund treatments and an ultimate cure for Facioscapulohumeral Muscular Dystrophy (FSHD), a genetic muscle-wasting disease affecting an estimated 3,500+ Australians and roughly 1 million people worldwide. The foundation operates as Australia's "peak body" for FSHD and pursues that mission across three interconnected pillars: funding medical research grants (over AUD $23 million disbursed across 11 countries since inception), driving clinical-trial readiness for the FSHD community, and advocating for patient access to future therapies with government and industry stakeholders.
The foundation's core operational asset is the Cure FSHD patient-led registry — a world-first e-health ecosystem and Clinical Trial Passport application built on the WeGuide platform and affiliated with the Treat-NMD global neuromuscular registry network. The registry integrates AI-powered whole-body MRI muscle imaging via a partnership with Springbok Analytics, converting MRI data into 3D musculoskeletal analyses and digital twins to quantify muscle volume, composition, and asymmetry. In July 2025, the foundation co-published a world-first AI disease progression model in Scientific Reports, predicting muscle decline at the individual muscle level to inform FSHD clinical trial design. Research infrastructure includes partnerships with the Murdoch Children's Research Institute, The Royal Children's Hospital Melbourne, Swinburne Neuroimaging, the National Imaging Facility, and the Garvan Institute. The foundation also established and operates Facio BioTherapies, a wholly-owned biotechnology subsidiary translating FSHD discoveries into clinical development.
FSHD Global generates revenue entirely through charitable channels: tax-deductible individual donations, corporate sponsorships (e.g., Club Wyndham / Travel + Leisure Co.), signature fundraising events including the Sydney Chocolate Ball, Muscles For Muscles Challenge, Club Wyndham Surf Challenge and LUXE Lunch, and community fundraising campaigns. The foundation receives no government funding. Its customer base is split between individual FSHD patients and families (registry participants across Australia), the international FSHD research and clinician community, and corporate partners. Leadership comprises CEO/Managing Director Emma Weatherley (2025 HESTA Excellence Award winner in Individual Leadership) and Board Chair Natalie Cooney (since 2021), supported by a small core team of 1–10 employees and a Board of Directors, Scientific Advisory Board and Scientific Committee.
FSHD Global firmographics
Firmographics- Name
- FSHD Global
- Legal name
- FSHD Global Research Foundation Ltd
- Website
- https://fshdglobal.org
- Company type
- Private
- Founded year
- 2007
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- FSHD Global Research Foundation is an Australian non-profit (founded 2007, Sydney) functioning as the country's peak body for Facioscapulohumeral Muscular Dystrophy, funding medical research across 11 countries and operating the world-first Cure FSHD patient registry with AI-powered whole-body MRI analytics and Clinical Trial Passport to accelerate global FSHD therapy development.
- Ownership category
- akta.pro rank
FSHD Global industry classification
Industry- Product category
- Neuromuscular Disease Research & Patient Advocacy Foundation
- NAICS
- Voluntary Health Organizations (813212), Grantmaking Foundations (813211), Scientific Research and Development Services (5417)
- SIC
- Services-Health Services (8000)
- 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
Where FSHD Global is headquartered
LocationHeadquarters
- HQ city
- Sydney
- HQ country
- Australia
- HQ region
- Oceania
Offices1 record
Markets served
FSHD Global business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Others
Revenue model
- Donations and Philanthropy: Tax-deductible donations from individuals, families, and supporters affected by FSHD. The foundation receives no government funding and relies on charitable contributions.
- Corporate Sponsorships: Corporate partnerships and event sponsorships from companies across industries, including event hosting, corporate challenges, and annual gala sponsorships.
- Signature Event Fundraising: Major annual fundraising events including Sydney Chocolate Ball, Muscles For Muscles challenge, Club Wyndham Surf Challenge, and LUXE Lunch generate significant community and corporate support.
Go-to-market motion1 record
Distribution channels3 records
Marketing channels8 records
FSHD Global product offering
Product offeringCore offering
FSHD Global Research Foundation is an Australian non-profit charitable foundation that funds medical research grants for Facioscapulohumeral Muscular Dystrophy (FSHD), operates the world-first Cure FSHD patient registry with a Clinical Trial Passport program, runs patient and medical advocacy efforts (including Parliamentary Friends of FSHD), delivers educational toolkits to patients and clinicians, and organises signature fundraising events to support its mission. Its core deliverables are research grant funding, patient clinical trial readiness infrastructure (including an AI-powered MRI muscle imaging and disease progression model), and advocacy for systemic change in FSHD diagnosis, treatment and access.
Product overview
FSHD Global Research Foundation operates primarily as a patient advocacy organization and research funder rather than a technology product company. Its core offerings include the Cure FSHD patient registry (built on WeGuide platform) featuring the Clinical Trial Passport for trial-ready patients, paired with AI-powered whole-body MRI muscle imaging via Springbok Analytics. The foundation also provides educational toolkits for patients and healthcare providers, funds medical research grants globally, and conducts signature fundraising events including the Sydney Chocolate Ball and Muscles For Muscles challenge. The registry integrates with the Treat-NMD global registry network for international research data sharing.
Differentiator
Problem solved
Functional benefit
Products and services
- Cure FSHD Patient Registry World-first patient-led digital registry and e-health ecosystem for Australians living with FSHD. Patients enrol to obtain a Clinical Trial Passport that houses their genetic and clinical data, AI-enhanced full-body MRI scans via Springbok Analytics, mental health screening, and natural history questionnaires, and to connect with clinical trial opportunities.
- Medical Research Grants Program Grant program funding medical research into FSHD across 11 countries since 2007, focused on slowing disease progression, muscle wellness and muscle technology. Over AUD $23 million raised for research to date.
- Patient and Medical Advocacy Systemic-change advocacy that advances diagnostic and medical infrastructure, supports therapeutic development, lobbies for patient access to future approved therapies, and engages policymakers through the Parliamentary Friends of FSHD network.
- Clinical Trial Passport Program Trial readiness tool housed within the Cure FSHD registry, storing each patient's DNA test results, AI-enhanced full-body MRI muscle scans via Springbok Analytics, mental health screening results, and natural history questionnaires to enable clinical trial participation.
Quantifiable outcome
- $23 million+ raised for medical research grants in 11 countries since 2007
- +4 more outcomes
Companies that use FSHD Global
Customer profileNamed customers3 records
Segments3 records
Ideal customer profiles3 records
FSHD Global technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Integration4 records
AI capability4 records
Feature4 records
FSHD Global partnerships and signals
Strategic signalPartnerships
13 partnerships are on record, tiered core and minor.
- Murdoch Children's Research Institute (MCRI)coreFSHD Global partners with MCRI for paediatric FSHD research, funding important research to ensure treatments can safely extend to children.
- The Royal Children's Hospital MelbournecorePartnership for paediatric FSHD clinical care and research collaboration with MCRI.
- Epicrispr BiotechnologiescoreClinical trial partnership where FSHD Global supported bringing EPI-321 trial to Australia. EPI-321 is the first therapy to silence DUX4 expression through epigenetic modulation, targeting the root cause of FSHD.
- Rare Voices AustraliaminorAdvocacy collaboration aligned with Australian Strategic Action Plan for Rare Diseases framework.
- Project MercurycorePatient-led global collaboration bringing together advocacy organizations, researchers, clinicians and biopharma partners across 10 countries to strengthen trial readiness and support evidence needed for global patient access to future FSHD therapies. FSHD Global represents Australia in this initiative.
- Facio BioTherapiescoreBiotechnology company established by FSHD Global to translate promising scientific discoveries into clinical development for FSHD treatments. CEO Emma Weatherley serves on the board of Facio BioTherapies.
- Springbok AnalyticscorePartnership for AI-powered muscle imaging analytics providing state-of-the-art whole-body MRI assessments as part of the FSHD Global Registry Project. Springbok has pioneered the FSHD disease progression model. Co-founded by Prof. Silvia Blemker, who also serves on FSHD Global's Scientific Advisory Board.
- WeGuidecoreTechnology partner that developed the Cure FSHD patient registry app and Clinical Trial Passport platform.
- Swinburne University of TechnologycoreAdvanced MRI imaging partnership via Swinburne Neuroimaging for muscle health studies and disease progression data collection. Lead site for full-body MRI scanning.
- National Imaging Facility (NIF)coreNational research infrastructure partnership providing access to advanced human imaging capabilities across Australian research network.
- Muscular Dystrophy AustraliacorePartnership for neuromuscular sector collaboration, webinars, and community support services.
- Treat-NMDcoreGlobal neuromuscular registry network framework affiliation making Cure FSHD registry data central to international disease research and industry reporting.
- Garvan Institute of Medical ResearchminorResearch partnership with Dr Kishore Raj Kumar investigating genomic approaches to enhance FSHD diagnostics.
Scale indicators5 records
Recent moves6 records
Expansion highlights5 records
FSHD Global competitors and assessment
Company assessmentDirect peers
- FSHD Society: US-based patient advocacy and research funding foundation dedicated exclusively to FSHD. Directly comparable as a disease-specific foundation funding FSHD research, supporting patient registries, and advocating for therapy development — and the historical global counterpart to FSHD Global.
- Parent Project Muscular Dystrophy (PPMD): US patient-led foundation focused on Duchenne muscular dystrophy that funds research, runs a patient registry, drives clinical trial readiness, and supports therapy development. Closely analogous operating model to FSHD Global but in an adjacent rare neuromuscular disease.
- TREAT-NMD: Global neuromuscular registry network with which the Cure FSHD registry is affiliated. Directly comparable as the international infrastructure backbone connecting national FSHD registries, enabling trial recruitment and harmonized data across countries.
- Friends of FSH Research: US nonprofit funding FSHD research, listed as a co-funder of the Springbok Analytics disease progression model alongside FSHD Global and FSHD Canada. Directly comparable as a co-funding partner on shared FSHD research programs.
Regional players
- FSHD Canada: Canadian FSHD-focused research and patient foundation; co-funder of the Springbok disease progression model with FSHD Global and Friends of FSH Research. Regional peer operating the same disease-specific foundation model in a different geography.
- Muscular Dystrophy Australia: Australian nonprofit supporting people with neuromuscular conditions including FSHD, with which FSHD Global partners on webinars and community support. Regional peer with overlapping patient-services and advocacy remit but broader disease scope.
- Rare Voices Australia: Australian national peak body for people living with rare diseases, with which FSHD Global partners on advocacy aligned with the Australian Strategic Action Plan for Rare Diseases. Comparable as a regional advocacy/umbrella peer addressing rare-disease policy and access.
Broad incumbents
- National Organization for Rare Disorders (NORD): US-based umbrella advocacy organization for rare diseases providing research grants, patient registries, and policy advocacy. Comparable as a broader-incumbent peer in rare-disease grantmaking and registry operations, with overlapping mission scope at greater scale.
- Muscular Dystrophy Association (MDA): Large US-based nonprofit funding research and providing care for multiple neuromuscular diseases including FSHD, ALS, and Duchenne. Comparable as a broader incumbent with overlapping patient-services, research-grant, and clinical-trial-support activities, but with a much wider disease mandate.
- Muscular Dystrophy UK: UK charity funding research and providing care across neuromuscular conditions. Comparable as a broader incumbent in the same rare-disease foundation space, with overlapping grantmaking and patient-advocacy functions but UK geographic focus.
Market position
Strengths4 records
Weaknesses4 records
Competitive moat5 records
Key risks5 records
Key highlights6 records
Customer concentration
FSHD Global social profiles
Digital presenceFSHD Global financial estimates
Financial estimateRevenue estimate
Valuation estimate
FSHD Global leadership team
Management profileNumber of profiles
Profiles5 records
FSHD Global subsidiaries and ownership
Company hierarchySubsidiaries1 record
FSHD Global funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
FSHD Global M&A and investment
M&A and investmentM&A
Investments2 records
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about FSHD Global
What does FSHD Global do?
FSHD Global Research Foundation is an Australian non-profit charitable foundation that funds medical research grants for Facioscapulohumeral Muscular Dystrophy (FSHD), operates the world-first Cure FSHD patient registry with a Clinical Trial Passport program, runs patient and medical advocacy efforts (including Parliamentary Friends of FSHD), delivers educational toolkits to patients and clinicians, and organises signature fundraising events to support its mission. Its core deliverables are research grant funding, patient clinical trial readiness infrastructure (including an AI-powered MRI muscle imaging and disease progression model), and advocacy for systemic change in FSHD diagnosis, treatment and access.
Is FSHD Global a public or private company?
FSHD Global is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was FSHD Global founded?
FSHD Global was founded in 2007. It employs 1 to 10 people.
Where is FSHD Global based?
FSHD Global is headquartered in Sydney, Australia, in the Oceania region.
How does FSHD Global make money?
Three revenue lines are on record. Donations and Philanthropy is the primary driver. The others are corporate Sponsorships and signature Event Fundraising.
Who are FSHD Global's main competitors?
Direct peers on record are FSHD Society, Parent Project Muscular Dystrophy (PPMD), TREAT-NMD and Friends of FSH Research. Regional players are FSHD Canada, Muscular Dystrophy Australia and Rare Voices Australia. Broad incumbents are National Organization for Rare Disorders (NORD), Muscular Dystrophy Association (MDA) and Muscular Dystrophy UK.
Does FSHD Global have an API?
No public API is recorded for FSHD Global.
What industry is FSHD Global in?
FSHD Global's product category is Neuromuscular Disease Research & Patient Advocacy Foundation. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS), with a secondary code of BPAGAKAL, Health & Medical Research Grantmaking Foundations. Its NAICS code is 813212 and its SIC code is 8000.