Global day shines a light on rare genetic disease affecting thousands
On 15th September, people around the world will unite for International Myotonic Dystrophy Awareness Day, a day dedicated to shining a spotlight on a little-known but life-changing genetic condition.
Over 59 organisations have formed the Global Alliance for Myotonic Dystrophy Awareness, including Muscular Dystrophy Australia, and are working together to raise awareness about myotonic dystrophy (DM), a serious genetic condition that affects thousands of individuals and families globally, including many Australians.
In recognition of the day, many landmarks around the world will be lit up in green to raise visibility for Myotonic Dystrophy. In Melbourne, look out for the Melbourne Town Hall and Rialto Building glowing green in support of the community on the night of the 15th of September.
Myotonic dystrophy is a progressive, inherited disease that affects muscle strength, respiratory systems, heart function, cognitive abilities, and more. Because the disease is so complex, myotonic dystrophy is often misdiagnosed and poorly supported. By uniting efforts to raise awareness, the Global Alliance seeks to shed light on the challenges faced by those living with myotonic dystrophy and to enhance understanding of the disease worldwide.
With no current cure or disease-modifying treatments available, raising awareness and fostering research are crucial steps toward improving the lives of those impacted by this condition.
Melbourne mum Nerida has two adult children, Marcus (29 years) and James (26 years) with Myotonic Dystrophy and has struggled over the years with the challenges that the diagnosis has brought to their lives.
“You go through hard times. When James or Marcus do any task, it takes three times more energy than for people without myotonic. I wish people would just accept those with disabilities. When they were young, they weren’t invited to parties, they weren’t accepted. People were hanging out with them at school but that’s it. That’s heart breaking and there is nothing we can do about it,” she says.
Catherine Stace, CEO of Muscular Dystrophy Australia, highlights the global reach of the Alliance: “In Australia and beyond, we are united in our mission to bring myotonic dystrophy out of the shadows. By working together with our global partners, we are not only raising awareness but also driving meaningful change in how this condition is perceived and managed. The strength of our community lies in our ability to support one another and advocate for a future where no one has to face myotonic dystrophy alone.”
Mike Snape of AMO Pharma said: “It has been a pleasure to interact with Muscular Dystrophy Australia and the Global Alliance, and we are grateful to them for all their dedication and hard work to support families affected by myotonic dystrophy.”
The Global Alliance for Myotonic Dystrophy Awareness invites everyone—individuals, families, healthcare professionals, companies, hospitals/clinics, research labs and advocates—to participate in this year’s International Myotonic Dystrophy Awareness Day on the 15th of September. Through your participation, you will shed light on the challenges faced by those with DM and promote a greater understanding of the disease. Find out more or to get involved, visit www.myotonic.org/international-dm-day
