We are global leaders, funders, change makers, innovators and advocates for giving life to muscles.

We believe a world without FSHD is possible.

Our Mission

FSHD Global Research Foundation is Australia’s Peak Body for Facioscapulohumeral Dystrophy (FSHD), operating globally with the world’s leading researchers, biotech’s, and communities to find a cure for FSHD, and improve muscle regeneration, function and wellness. We are Giving Life to Muscles.

Our History & Achievements

The Foundation was established in 2007 by Bill Moss AO, a well-known Australian businessman and philanthropist who lives with FSHD. Since then, we have been addressing the chronic lack of medical research funding and awareness of FSHD in Australia and globally, as well as driving systemic change to enable clinical trials for FSHD to be run in Australia.

The Foundation undertakes a wide range of medical research focused on; slowing this disease, muscle wellness and muscle technology. The aim of this research is not only to find a cure for FSHD, but to find ways that all people suffering from muscle weakness caused by neuromuscular disorders, muscle trauma and ageing will benefit.

Since 2007, the Foundation has raised over $23 million to fund medical research grants in 11 countries; revolutionising Australia’s diagnostic and muscle measurement technologies, establishing Australia’s first patient-led FSHD disease registry and advocating for our FSHD community to the Federal Government through our Parliamentary Friends of FSHD events, which have been running since 2021.

With no government funding the main sources of financial support for FSHD research and advocacy are individuals afflicted by FSHD, their friends, supporters, as well as corporate sponsors.

All grants and biotech investment decisions are made through careful consideration, guided by our Scientific Advisory Boards, Board of Directors and International collaborations, ensuring FSHD Global remains a leader in discovering and advancing world’s best science, and being a true catalyst for change.

This multi-award winning Foundation has been hailed for our transparency, effectiveness and impact.