The FSHD Global Research Foundation was established in 2007 by Australian businessman, philanthropist and sufferer of FSHD, Bill Moss AO. Our mission is to find a cure for Facioscapulohumeral muscular dystrophy (FSHD) within five years. A disease that affects an estimated one million people globally. It is caused by an overexpression of a protein called DUX4, which is toxic to muscle.
The true prevalence of this disease is still unknown. Due to poor diagnostics and misdiagnosis, many people live unaware they carry the genetic gene, at risk of passing down generations. The Foundation’s aim is to increase awareness and fund national and international researchers to undertake both clinical and basic research projects that can lead to identifying the cause and a future cure for FSHD. We also aim to increase the knowledge and awareness of FSHD among medical practitioners, researchers, patients, donors and the general community.