Celebrating the 5th Annual International Myotonic Dystrophy Awareness Day!
On September 15th, 2025, the Global Alliance for Myotonic Dystrophy Awareness united over 60 organizations from around the globe to mark the fifth annual International Myotonic Dystrophy Awareness Day. Together our partners and community members shined a light on DM through advocacy, celebration and creativity.
DM Advocacy in Action
To commemorate the day, MDF hosted a special Advocacy Webinar featuring, Kevin Brennan, MDF's Advocacy Lead. The presentation focused on MDF's 2025 U.S. advocacy priorities and how the DM community is helping shape public policy to improve care and accelerate research.
Click here to watch our Awareness Day Advocacy webinar! >>>
Highlights from Around the World
Myotonic dystrophy awareness efforts continue to expand across the globe! In celebration the day, our incredible community members and partners around the world dressed in green and lit up their local and national landmarks. The Light Up Green initiative raises visibility for myotonic dystrophy in communities everywhere, sparks conversations across social media, plus they make for some great photos!
Some exciting highlights from this year include:
- The University at Albany's RNA Institute lit up more of New York than ever before and hosted a community event to raise awareness!
- The University of Florida's NeuroGenetics Student Organization wore International DM Awareness Day shirts to the lab and welcomed a guest speaker living with myotonic dystrophy.
- Community members brought awareness to their towns and local communities with coordinated green shirts!
- One community member, Jessica, came up with a creative idea to hand out green glow sticks along with information about DM!
- The Dyne Therapeutics team joined the celebration by wearing green in solidarity.
- PepGen highlighted a recent a recent panel featuring DM community members, including one of MDF's Support Group Facilitators, Jim Dolan.
- GrittGene Therapeutics shared reflections on DM2 and reaffirmed their commitment to advancing research.
MDF thanks all Global Alliance Members for their ongoing partnership and unwavering dedication the global myotonic dystrophy community!
Photo Highlights from September 15th
Check out some of the incredible photos shared by community members and partners below! Looking for more photos, search your favorite social media platform using the official hashtags #myotonicDystrophy and #myotonicDystrophyAwareness.
Suspension Bridge at Shire Murray, Australia 2025
Gainesville, FL, USA 2025
Portland, OR, US 2025
California, USA 2025
Indiana, USA 2025
Optus Stadium, Australia 2025
