On Wednesday, February 12th, we held the fourth Parliamentary Friends of FSHD event, co-chaired by Dr. Mike Freelander MP and Bridget Archer MP. This was a day of celebration and empowerment as we marked a significant milestone in our mission to find a cure for Facioscapulohumeral Muscular Dystrophy (FSHD) with the launch of our groundbreaking patient-led registry, ‘Cure FSHD’. This registry is a world-first data hub designed to empower people living with FSHD to take control of their journey, gain their ‘Clinical Trial Passport’, and become trial-ready.
The event, held at Parliament House in Canberra, was attended by a diverse and passionate group, including our patient community, clinicians, advocates, researchers, and industry representatives from Muscular Dystrophy Australia, Muscular Dystrophy NSW & QLD, Neuromuscular WA, Genetic Alliance Australia, Rare Voices Australia, Springbok Analytics, Medicines Australia, and WeGuide. We were also joined by many MPs and Senators who demonstrated their commitment to our cause.
This powerful advocacy event raised awareness for FSHD and highlighted the incredible foundations laid by FSHD Global to fast-track therapies for our patients, in line with the Australian Strategic Action Plan for Rare Diseases. A special thank you to Rare Voices Australia for their ongoing advocacy, which has created a framework for us to align to, ensuring a stronger rare disease sector with a bigger impact despite modest investment.
We are extremely grateful to all those who have supported this journey, especially our partners at WeGuide for developing the app, and Springbok Analytics for their innovative technology that quantifies disease progression, putting actionable data back into patients’ hands.
Through philanthropic fundraising, without any government funding, we have achieved so much. Now, we call on the Australian Government to support our request for $500,000 in funding over two years to help us continue our vital work as Australia’s peak body for FSHD. This modest funding request will have a tremendous impact on the Australian FSHD community, helping to provide care, support, equitable access to diagnostics, and fast-tracking therapies.
Today, we also heard from Kalvin (@dudeability), who shared how his diagnosis came unexpectedly. Many individuals living with FSHD are misdiagnosed or unaware they even have the disease, making it difficult to plan for the future as they face progressive disability and loss of independence. This devastating disease leads to widespread weakness, pain, fatigue, and mental health challenges.
Treatments and a cure are within reach—and the time to act is now. Together, we can make real change for those living with FSHD. We are excited to share more updates with our community soon and are optimistic about the impact of our funding request.
Learn more about ‘Cure FSHD’ here: Cure FSHD
Watch the recording of the event: Parliamentary Friends of FSHD 2025 – YouTube
Learn more about our ‘Clinical Trial Passport Program’: Cure FSHD Clinical Trial Passport Program