Be a Myotonic Dystrophy Research Advocate During Rare Disease Month

Published on Fri, 01/22/2021

Americans have faced extraordinary and unprecedented challenges in 2020. Individuals living with myotonic dystrophy have confronted significant health and medical difficulties. Friends and families have suffered serious personal financial problems and setbacks too. And through all of these crises, our country and our political leaders are as divided as ever. 

While these hard times will continue into the 2021, the Myotonic Dystrophy Foundation community recognizes that we cannot let up in our efforts to vigorously advocate for our fair share of federal funding for research and medical care to achieve our goal of care and a cure for myotonic dystrophy. We look to this new year with optimism and hope. Our task is not easy and it will require dedication and hard work, but together we will succeed.

Click Here to Watch the 2021 Advocate Training!

Strength in Unity

Since our founding over 14 ago, our advocacy program has made significant strides in educating our elected officials about myotonic dystrophy and increasing federal funding for research. Further, in partnership with other rare disease organizations, we have protected important health insurance protections for the millions of Americans living with pre-existing medical conditions like myotonic dystrophy. 

As we embark on the new year, the Myotonic Dystrophy Foundation is preparing to launch an ambitious new advocacy agenda. We will begin our 2021 advocacy campaign by inviting the myotonic dystrophy community to join us on February 28th for Rare Disease Day. During Rare Disease Day and throughout the month of February, advocates from across the country contact their congressional representatives to educate them on the challenges facing individuals with rare diseases like myotonic dystrophy, and urge them to take action to help us realize our goals for cures, treatments, and improved medical care.

To prepare for Rare Disease Day, the Myotonic Dystrophy Foundation advocacy team is hosting a webinar on February 8th to review our advocacy priorities, and assist advocates in understanding how to contact your congressional representatives. We will help advocates figure out how to contact their Senators and Representative’s offices to request a virtual meeting, how to participate in a successful virtual meeting with congressional staff, and how to develop a productive longer-term relationship with your elected officials. 

Our Advocacy Success Starts with You!

Over the past 14 years, Myotonic Dystrophy Foundation advocates have helped obtain $150 million in federal funding for myotonic dystrophy research supported by the National Institutes of Health. These funds have supported leading researchers from across the country who are advancing science to better understand the causes of myotonic dystrophy, and get us closer to the day we discover a cure. Additionally, in the past 4 years, we have secured an important new source of research funding as part of the Department of Defense Peer Reviewed Medical Research Program (PRMRP). We have obtained $5.5 million in new myotonic dystrophy research funding in the past two fiscal years and expect to announce more grant funding this year. 

This year, in addition to continuing our research advocacy, the Myotonic Dystrophy Foundation will be asking the United States Congress to establish a nationally recognized Myotonic Dystrophy Awareness Day. MDF is also working with organizations across the globe to identify a date to dedicate as International Myotonic Dystrophy Awareness Day. This will establish an important public awareness platform to increase understanding of myotonic dystrophy among health care professionals, researchers, politicians, the media, and the general public. 

Further, we are exploring opportunities to expand existing federal support for NIH designated myotonic dystrophy research centers. These institutions have played an important role in bringing new, bright researchers to the field and have helped pioneer cutting edge science which is helping us find a cure. 

Be a Myotonic Dystrophy Research Advocate

Since our founding we have overcome many obstacles and have achieved many victories that have helped improve the lives of individuals living with myotonic dystrophy. We are again living in hard times as we strive to emerge from a once a century pandemic and an economic crisis as bad as the Great Depression. We will emerge from these crises stronger and more unified as a nation. We will seize this opportunity to continue our advocacy to ensure we achieve our goal of conquering this disease and finding a cure. We hope you will join us in this exciting and important journey.

Click Here to Watch the 2021 Advocate Training!

2021 Advocacy Resources

  • Talking Points. Instructions on contacting Congress and talking points for the meetings.
  • MDF Advocacy Priorities. Background document and MDF congressional requests that should be shared with staff during and after congressional meetings.
  • Sample Letter to Congress. A template for advocates who would prefer to email or send a letter to Congress.


Published January 21, 2021