Facioscapulohumeral Muscular Dystrophy (FSHD) is a highly complex genetic muscle wasting disease causing progressive weakening and loss of muscle in adults and children, robbing the ability to walk, talk, smile, blink or even eat.
FSHD Global Research Foundation was founded in 2007 by Australian philanthropist Bill Moss AO, who lives with FSHD. Since then, the Foundation has raised over $23 million and funded 73 research grants across 11 countries.
As Australia’s peak body for FSHD, we are addressing the global lack of awareness and enabling clinical trials in Australia. We fund research into muscle wellness, technology, and treatments aimed not only at curing FSHD but also benefiting people affected by muscle weakness from neuromuscular disorders, trauma, and ageing.
Guided by transparency, accountability, education, and collaboration, we work globally to improve lives. Our world-first patient-led registry and data hub, Cure FSHD, expands on traditional datasets—incorporating genetics, methylation, full-body MRI scans and Springbok analysis, mental health insights, and quality of life data—to accelerate clinical trial readiness. We are committed to fast-tracking therapies and driving systemic change for people living with FSHD.