Three years ago, the myotonic dystrophy community achieved a major victory in our work to better understand the causes of the disease and discover treatments and ultimately a cure. For the first time, the United States Senate included myotonic dystrophy as an eligible condition that could be awarded federal research funding as part of the Department of Defense Peer Reviewed Medical Research Program (PRMRP). In the past two scientific peer review cycles since this change, researchers have been awarded $6.1 million in federal grants to study myotonic dystrophy.
An Annual Commitment to DM Advocacy
Each year the Senate must pass legislation funding the program and each year they must approve a new list of eligible diseases and conditions. To be included in the program for the fourth year in a row, myotonic dystrophy funding advocates have been working hard. In late February, during Rare Disease Week, myotonic dystrophy funding advocates visited Washington, D.C. and made calls and sent emails to their Members of Congress to urge support for our research request. This outpouring of support made a difference and helped legislators and staff better understand the challenges facing our community and the importance of increased research funding. Over the past several years, Senators Dianne Feinstein (D-CA), Richard Durbin (D-IL) and Richard Shelby (R-AL) have heard the voices of our community and have written language into the Department of Defense Appropriations bill to include myotonic dystrophy. While the national legislature has faced an unprecedented challenge during the coronavirus pandemic that has demanded increased and unprecedented new federal spending, we are hopeful that Congress will pass an appropriations bill this summer that includes our request. We remain in close contact with our legislative champions in Congress and are closely engaged in the appropriations process as it moves forward.
We are also deeply engaged in efforts to increase myotonic dystrophy research funding at the nation’s leading biomedical research agency – the National Institutes of Health. In April 2019, myotonic dystrophy funding advocate, Timothy Haylon, from Massachusetts testified before Congress to urge the House Appropriations Subcommittee on Health and Human Services to increase myotonic research funding supported by the NIH. We have also successfully advocated for Congress to include provisions in these annual spending bills expressing congressional support for myotonic dystrophy research and support to attract new researchers to the field. While this work has helped increase awareness and support, NIH funding for myotonic research has lagged behind other diseases and conditions and we need our community to speak with a louder voice to demand change.
To be successful we need your help! We are working to recruit advocates from all fifty states to educate Congress about myotonic dystrophy and demand our fair share of federal research funding. How can you help?
Become a Myotonic Advocate so you can join the fight for more research funding, better health care coverage, and accelerate the path to treatments and a cure. Being a Myotonic Advocate means you get to know your U.S. Senators and local U.S. Representatives and participate in Myotonic congressional advocacy campaigns by making calls (and eventually visits) and sending emails and letters to them on issues of importance to our community. You decide on the form of communication that is best for you. We are advocating for more federal funding for myotonic dystrophy research, protecting our community from health insurance discriminatory practices, maintaining important incentives for the research and development of rare disease drugs, and ensuring access to important disability programs and protections.
Don't Know Where to Start? Join us for an Myotonic Dystrophy Advocacy Workshop
As part of our efforts to begin to build a giant team of Myotonic Advocates from across the country we will be hosting a live Myotonic Dystrophy Advocacy Workshop on July 20th at 12 PM PDT to teach interested advocates the basic information and communications skills you will need to know to succeed. This Advocacy 101 program will cover the basics like how to find out who your Senators and Representatives are and how to contact them. We will review best practices for communicating with your elected representatives and sample emails and talking points that Myotonic will be developing and sharing with advocates in the form of Legislative Action Alerts. And we have time to answer your questions regarding this work.
To quote Senator Robert F. Kennedy, “Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, those ripples build a current that can sweep down the mightiest walls of oppression and resistance.”