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FSHD Global 
Research Foundation

The FSHD Global Research Foundation was established in 2007 by Australian businessman and philanthropist Bill Moss AO, who lives with FSHD.

Our core mission is to fund medical research to find treatments and a cure for Facioscapulohumeral muscular dystrophy (FSHD), a disease that affects an estimated one million people globally. It is caused by an overexpression of a toxic protein called DUX4, which causes progressive muscle weakness and muscle loss. FSHD patients slowly lose the ability to walk, talk, smile or even eat.

Beyond our goal to cure FSHD, the Foundation is focussed on building healthy muscles. Our funded research into muscle wellness and muscle technology benefits a wide range of muscle conditions, including other muscular dystrophies, aging muscles and various muscle disorders and even has application to innovate sports medicine. FSHD Global also invests directly into well managed Biotech’s that have a focus on FSHD disease modification, as well as muscle technology and muscle regeneration which has a prospect of leading to clinical trials in patients with any muscle disease.  

As the peak medical advocacy body for FSHD in Australia, we drive awareness and understanding of FSHD among medical practitioners, researchers, patients, and the general community. We are connecting the nation through our national diagnostic network, and building the medical infrastructure required to support clinical trials to ensure that funded research translates into future treatments for Australian FSHD patients.

For more information about the FSHD Global Research Foundation, visit

© 2023 - FSHD Global Research Foundation


Phone: 02 8007 7037

ABN: 79128037614


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