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Mark your calendar on September 15th for International Myotonic Dystrophy Awareness day.
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International Myotonic Dystrophy Awareness Day aims to garner the attention of the wider general public, policy makers, regulators, biopharmaceutical representatives, researchers, health care professionals, and anyone with an interest in changing the future of myotonic dystrophy. Raising awareness of DM will help improve service provision, basic research, drug development, and policymaking related to the disease. Increased funding for myotonic dystrophy research will improve health outcomes, reduce disability, and increase life expectancy for individuals living with the disease, and holds great promise for helping individuals with diseases with similar genetic bases, such as Fragile X syndrome and Huntington’s disease.
Raising DM Awareness can be as easy as wearing green or sharing on social media!
In honor of International Myotonic Dystrophy Awareness Day on September 15th, we invite you to request your local landmarks, monuments, and important buildings light up in green! Since the first International DM Awareness Day in 2021, dozens of buildings have lit up in green across the US and the world, including the NY State Capitol building, the Matagarup Bridge in Perth, Australia, windmills in the Netherlands, castles in the UK, and more! This initiative increases DM visibility across communities and social media (not to mention it is a great photo opportunity!).
Raising DM Awareness can be as easy as wearing green or sharing on social media!
Share the Anesthesia Guidelines
People with DM can have serious, life-threatening reactions to anesthesia and require careful monitoring. Make sure your provider is aware of this by sharing the guidelines.
Share resources from the foundation
Help spread trusted, evidence-based information by sharing MDF resources with your community, healthcare providers, schools, or local organizations to increase understanding of myotonic dystrophy.
Amplify awareness by sharing MDF’s Digital Academy videos, which provide accessible education on DM for individuals, families, caregivers, and medical professionals.
By joining the DM Family Registry, you help researchers better understand myotonic dystrophy and support progress toward improved care and future treatments.
Get involved in research opportunities to help advance scientific knowledge, improve clinical care, and move new therapies closer to reality for the DM community.
Stay informed on DM drug development
Follow updates on DM drug development to stay informed about emerging therapies and share progress with others to help build awareness and hope.
Organize a local fundraiser to support DM programs and research while raising awareness in your community through meaningful, visible action.
Share your healthcare or diagnosis stories with Story Booth, an independently operated research database from the University of Pittsburgh and Johns Hopkins University.
Post on social media
Use your social media platforms to raise awareness by sharing facts, personal stories, and campaign messages that help broaden the reach of International DM Awareness Day.
Like and share MDF's posts on social media
Support the campaign by liking, sharing, and commenting on MDF’s social media posts to help increase visibility and amplify accurate DM information.
Display an International DM Awareness Day window sign at your home, workplace, or business to spark conversations and show visible support in your community.
Wear or share DM awareness merchandise to start conversations, show solidarity, and help spread awareness beyond International DM Awareness Day.
Advocacy is a powerful way to raise awareness and drive change for the DM community. By speaking up and engaging with policymakers, advocates can influence research funding, accelerate the development of new therapies, support clinical trials, and improve quality of care. With the right tools and guidance, your voice can help shape a better future for everyone living with myotonic dystrophy.
The Global Alliance brings together over 60 myotonic dystrophy-focused organizations from around the world to raise awareness, share resources, and support the DM community. By working together across borders, these groups amplify the reach of education, advocacy, and research, helping to improve the lives of people living with DM everywhere.
Published: December 5, 2025
Published: December 5, 2025
Published: December 5, 2025
