Raise Myotonic Dystrophy Awareness for Rare Disease Day 2022

Published on Tue, 02/15/2022

Join MDF in Raising Myotonic Dystrophy Awareness with Your Representatives in Washington, DC.

Make Your Voice Heard on February 28th, Rare Disease Day!

Myotonic Dystrophy Foundation advocates from across the United States are joining together on Monday, February 28th and sending a shared message to our U.S. Senators and Representatives in Washington, D.C. that hundreds of thousands of Americans are living with rare diseases and conditions like myotonic dystrophy.  We are urging Congress to support increased federal funding for myotonic dystrophy research, protect incentives for companies to continue to invest in rare disease research and drug development, and fund and modernize the Food and Drug Administration so it can more quickly approve safe and effective drugs.

Last year, MDF advocates succeeded in raising awareness and increasing federal funding for myotonic dystrophy research.  In August, the U.S. Senators Tim Kaine (D-VA) and Amy Klobuchar (D-MN) introduced the first ever congressional resolution declaring September 15th International Myotonic Dystrophy Awareness Day.  They were joined by Senators Tina Smith (D-MN), Cynthia Lummis (R-WY), and Susan Collins (R-ME). 

For the fifth year in a row, Congress included myotonic dystrophy among a small group of diseases and conditions eligible for funding under the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP).  To date, this program has funded over $7.7 million in new myotonic dystrophy research and more grants will be awarded soon.  Through our partnerships with NORD and the EveryLife Foundation, we also successfully advocated for efforts to accelerate the development of new therapeutics for rare disease, important newborn screening programs and funding, and access to safe and affordable medications.    

As we prepare for Rare Disease Day, and as part of our new strategic plan, MDF is more focused than ever on advocacy.  We are launching our first ever national advocacy committee which will host grassroots advocacy webinars, launch a nationwide advocacy recruitment campaign, and host a spring virtual congressional advocacy day.  This group will help us chart this exciting new course and make an even bigger impact in Washington, D.C., state capitals, and across the globe.  This year we will pursue new and expanded myotonic dystrophy research funding and join with our friends in the rare disease community to advocate for improvements in the current FDA drug approval process to speed the review and approval of new safe and effective drugs. 

Visit the MDF Advocacy hub to find a sample letter to share your story with Congress and urge support for our advocacy objectives.  MDF will also include information on how you can recruit your family and friends to join us on Rare Disease Day, and every day, to make a difference.