We believe in
Giving Life to Muscles
by building muscles
for those who can’t.
Through our funded research and advocacy
programs we are dedicated to finding treatments
and an ultimate cure for FSHD, while improving
the quality of life for everyone who needs
healthy muscles.
What is FSHD?
Facioscapulohumeral Muscular Dystrophy (FSHD) is a highly complex genetic muscle wasting disease causing progressive weakening and loss of muscle in adults and children, robbing the ability to walk, talk, smile, blink or even eat.
Our Key Pillars
Find A Cure
We fund medical grants, investing into biotech, and progress the pathway for clinical trials to fast-track disease modifying therapies.
Muscle Regeneration
We are focused on slowing the progression of FSHD and improving quality of life through investment in muscle wellness and technologies. FSHD Global Research Foundation is bigger than one disease – we are creating a better future for muscles for everyone.
Patient & Medical Advocacy
Through patient and medical advocacy, we drive systemic change through advancing diagnostic and medical infrastructure to support therapeutic development and improved quality of life and lobby to ensure our patients will have access to future approved therapies.
Biotech
We support well managed biotechnology companies that are focused on novel treatments for FSHD or are specifically developing treatments to improve musculoskeletal health, strength and wellbeing.
How You Can Help
Unleash your inner hero and help us give life to
muscles through your heart, hands, pocket or time.
Donate
Make a tax-deductible donation
today to help us give life to muscles.
We accept cash and cryptocurrency.
Signature Events
make you feel good while you’re
doing good.
Volunteer
behind the cause! We rely on the
passion and empathy of volunteers
across all aspects of our work, from
events to professional skills.
Corporate Partnerships
We have valued partnerships with corporations across all industries that benefit the organisation, its employees and the Foundation.
Join Cure FSHD!
Our innovative patient-led registry for FSHD enables Australians living with FSHD to obtain their ‘Clinical Trial Passport’, guiding you through the steps to complete all diagnostic testing and questionnaires required to join our community of trial ready patients and contribute to groundbreaking research. Cure FSHD is proudly part of the Treat NMD global registry framework.
About Us
We have a strong, dynamic and driven team. Through
active fundraising and the support of the wider
community, we advance towards clinical trials and
drug developments, aimed at preventing muscle
wasting and improving quality of life for those living
with FSHD.
We have a strong, dynamic and
driven team. Through
active fundraising and the
support of the wider
community, we advance
towards clinical trials and
drug
developments, aimed at
preventing muscle
wasting and
improving
quality of life for
those living
with
FSHD.
Signature Events
Ball 2026
to help fast track treatments for
our FSHD community.
Thanks to everyone who contributed, we’ve raised nearly $70,000 to help make a real difference in the fight against FSHD!
The squats are done, but the mission remains. We’ll be back next year to go even bigger!
#musclesformuscles and #fshdglobal
