Facioscapulohumeral Muscular Dystrophy (FSHD) is a highly complex disease and progressive muscle wasting disease causing weakening and loss of skeletal muscle in adults and children, robbing the ability to walk, talk, smile, blink or even eat.
The FSHD Global Research Foundation was established in 2007 with a core mission to fund treatments and an ultimate cure for FSHD.
Since 2007, the Foundation has committed over $11 million to fund 56 ongoing medical research grants in 11 countries; the USA, Canada, the Netherlands, Israel, Italy, France, Belgium, Spain, New Zealand and Australia.
This multi-award winning Foundation has significantly advanced global research into muscle wellness, muscle technology and drug discovery to advance clinical trials for FSHD.
Driven by strong governance, purpose and passion, we rely on your support to drive research, awareness and fundraising for our mission.
Multi-award winning Charity
Winner of Outstanding Achievement in the Australian Charity Awards 2021, 2020, 2019 and 2018 Winner of the Charity of the Year in 2017.
The FSHD Medical Education Portal is a ‘one stop shop’ for people living with FSHD. This platform provides education on advancements in the disease, access to clinical trial readiness programs and the Australian FSHD Registry.
$0 remuneration
Our Board of Directors, Science Advisory Boards, Patrons and Ambassadors receive $0 remuneration
Ongoing Medical Research grants
55 ongoing Medical Research grants into Basic, Diagnostic, Therapeutic and Biotech research areas
100% of all tax deductible donations
With the onset of COVID-19 our proud record of allocating 100% of tax deductible donations to medical research has reduced to 90%
$18 million in 13 years
FSHD Global has raised over $18 million in 13 years funding medical research in 10 countries
FSHD educational toolkits
FSHD Global launched Australia’s first FSHD educational toolkits for patients, GP’s and allied health groups to better understand the impact of living with FSHD
Largest contributors to FSHD medical research
We remain one of the largest contributors to FSHD medical research worldwide
