Founded in 2007 by Bill Moss AO, FSHD Global addresses the lack of medical funding and awareness for FSHD. Without government funding, the organization has successfully collaborated with scientists worldwide, funding ongoing medical research grants in multiple countries. By allocating 100% of tax-deductible donations to research grants, FSHD Global aims to improve the quality of life for those affected by FSHD and ultimately find a cure. The organization's funding comes from individuals, supporters, and corporate sponsors, and all investment decisions are made by scientific committees and advisory boards. FSHD Global is the first and only FSHD organization in Australia and is committed to being a leader in discovering the best science for FSHD.