Presented on September 15, 2023.

A special webinar presentation in honor of September 15th, 2023, the 3rd annual International Myotonic Dystrophy Awareness Day! Learn how you can take action today to increase DM Awareness around the world and to change the future of myotonic dystrophy (DM).

Presentations include:

• The Importance of Patient Registries for Improving Clinical Trial Readiness
  Sofia Olmos, PhD, Myotonic Dystrophy Family Registry Coordinator
   
• MDF’s 2023 Advocacy Efforts on Capitol Hill
  Kevin Brennan, MDF Advocacy Consultant

Resources referenced in this webinar:

• The official International Myotonic Dystrophy Awareness Day website.
   
• Myotonic Dystrophy Family Registry Information.
   
• Myotonic Dystrophy Foundation Advocacy Day Talking Points, plus information on Federal Legislative Priorities.
   
• 2023 Template for contacting your Representatives.
   
• Downloadable Social Media Toolkits for spreading DM Awareness.
   
• Downloadable Myotonic Dystrophy Resources, including Anesthesia Guidelines, Exercise Guide, and more!
   
• Deutschsprachige Ressourcen zur Myotonen Dystrophie.
   
• Recursos en español para distrofia miotónica.

In addition to the International Myotonic Dystrophy Awareness Day “Call to Action” to urge Congress to support federal funding for myotonic dystrophy research, if you are interested in volunteering to become more involved in MDF advocacy, please email Kevin Brennan at kbrennan@bluebird-strategies.com. He is recruiting interested advocates who want to build awareness and action in Congress on behalf of our 2024 legislative priorities. As an advocate you’ll be invited to participate in several advocacy training webinars and efforts to recruit 15-20 family and friends to email, write, call, or visit our Senators and Representatives next year to support research funding.

Please share this video link with your friends and family to help celebrate International Myotonic Dystrophy Awareness Day!

We also encourage you to share your experiences with myotonic dystrophy on social media, and talk to members of your community — your friends, family, clinical care teams, classmates, and colleagues — about your experiences with DM.

Be sure to post with (and follow) the official International Myotonic Dystrophy Awareness Day hashtags #myotonicDystrophy and #MyotonicDystrophyAwareness to see what your fellow community members around the world are up to!

Thank you all for helping to change the future of myotonic dystrophy!