MDF Advocates Work to Secure Federal Myotonic Dystrophy Research Funding

Published on Fri, 09/29/2023

MDF Advocacy Day on Capitol Hill

On Thursday, September 7th, over 130 Myotonic Dystrophy Foundation advocates from 23 US states and five other countries visited Congress on Capitol Hill in Washington, D.C. to ask for more federal research funding for myotonic dystrophy. We blanketed Capitol Hill and completed over 100 congressional meetings, spreading awareness of the seriousness of myotonic dystrophy and the urgent need for treatments and a cure.

During lunchtime, MDF sponsored an educational briefing in the Russell Senate Office Building that featured U.S. Senator Amy Klobuchar (D-MN), co-sponsor of last year’s International Myotonic Dystrophy Awareness Day resolution, who discussed the importance of increased funding for DM research. Senator Klobuchar was joined by leading federal researchers, Lindsey A. Criswell, MD, MPH, DSc, National Institute for Arthritis, Musculoskeletal, and Skin Diseases (NIAMS) Director and US Army Colonel Sarah Goldman, PhD, Congressionally Directed Medical Research Program (CDMRP Director), who also oversees the Peer Reviewed Medical Research Program.

Following a full day of congressional meeting, we launched the 2023 MDF Annual Conference with video tributes from Senators Tim Kaine (D-VA) and Cynthia Lummis (R-WY), our 2023 MDF Congressional Leadership Award winners and sponsors of the U.S. Senate resolution establishing September 15th as International Myotonic Dystrophy Awareness Day. It was an amazing Advocacy Day and Annual Conference as we elevated our voices and urged Congress to increase DM research funding and accelerate our work towards treatments and a cure!

Click here to learn more about the 2023 MDF Annual Conference.

Click here to view photos from MDF Advocacy Day on Capitol Hill on Facebook!

DM Advocates Keep Up the Momentum on September 15

On Friday, September 15th, MDF hosted a special webinar presentation to commemorate the 3rd annual International Myotonic Dystrophy Awareness Day. The webinar focused on two topics: the Importance of Patient Registries for Improving Clinical Awareness and a Report on MDF's 2023 MDF Advocacy Efforts on Capitol Hill. The advocacy section focused on the logistics connecting with elected representatives and included instructions, templates, and resources to ensure our advocates requests for federal funding for DM research could be a success.

Click here to watch our 2023 International Myotonic Dystrophy Awareness Day webinar.

Click here to learn more about MDF's ongoing advocacy efforts and how you can get involved.