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About The Cause

Facioscapulohumeral Muscular Dystrophy (FSHD) is one of the most common forms of Muscular Dystrophy affecting adults and children.  

FSHD is often referred to as a slow death disease, as muscles deteriorate rapidly, patients straggle to walk, talk, blink, smile, or even eat. It is a genetic disease with no boundaries.

With no Government support, FSHD Global Research Foundation is Australia’s Peak Body for FSHD, funding medical and patient advocacy and medical research to fast track therapies and a cure.

Established in 2007 by Australian businessman and philanthropist Bill Moss AO, and now chaired by his daughter, Natalie Cooney. FSHD Global is a global catalyst for FSHD, funding world class science, integrating the patient voice and registries, supporting the commercialisation of future therapeutics, advancing muscle regeneration technologies and establishing an Australian clinical trial infrastructure framework to bring clinical trials to Australia.


We are "Giving Life to Muscles".


For more information about the FSHD Global Research Foundation, visit

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© 2024 - FSHD Global Research Foundation


Phone: 02 8007 7037

ABN: 79128037614



© 2024 - FSHD Global Research Foundation 

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