According to Merriam-Webster’s dictionary, advocacy is the act or process of supporting a cause or proposal. Since our founding in 2007, Myotonic Dystrophy Foundation advocates have been educating Congress on the need for increased myotonic dystrophy research funding, working with the Social Security Administration to eliminate red tape for individuals with congenital myotonic dystrophy, and leading initiatives with the U.S. Food and Drug Administration to accelerate drug development and better understand the desires of individuals living with myotonic dystrophy.
For over 13 years, MDF advocates from across the country have achieved a remarkable series of victories in our path towards a cure.
- Myotonic Dystrophy Research – Since 2007, the National Institutes of Health, the nation’s leading funder of biomedical research, and the Department of Defense Peer Review Medical Research Program (PRMRP), have awarded over $155 million in myotonic dystrophy grants.
- Disability Rights – After a year-long advocacy campaign, in 2017, the Social Security Administration added congenital myotonic dystrophy to their Compassionate Allowance Program, which pre-qualifies serious diseases and conditions and provides a faster, streamlined process to apply for and receive disability benefits including health insurance coverage.
- Drug Development – MDF hosted the first ever Myotonic Dystrophy Patient-Focused Drug Development meeting in 2016, with FDA senior leadership, to highlight perspectives of patients and caregivers as part of an initiative to drive biopharmaceutical discovery. The Myotonic Dystrophy Voice of the Patient report was producing following this meeting and was delivered to FDA. Since we launched this work, there are now 45 biopharmaceutical companies investigating DM therapies.
These victories have been made possible due to the individual and collective advocacy of our dedicated community. Highlights of these individual efforts include:
- In 2014, Kayla Vittek and her mom Lisa Harvey became the first myotonic dystrophy advocates to testify before Congress in support of legislation known as the MD-CARE Act, which has increased federal muscular dystrophy research funding including a dedicated myotonic dystrophy Wellstone Center and related disease prevalence research.
- In 2017, Martha Montag Brown, the current MDF Vice Chair, led hundreds of California advocates in a successful effort to have the U.S. Senate add myotonic dystrophy to the PRMRP research program.
- In 2019, Tim Haylon, became the first MDF advocate to testify before the House Appropriations Committee. His testimony was instrumental in Congress including provisions in annual spending bills to encourage the National Institutes of Health to make myotonic dystrophy research a higher priority.
As we look to the future and redouble our efforts to deliver effective myotonic dystrophy treatments and a cure, we need your help. We are inviting every member of the community to become an advocate. Being an effective advocate starts with individuals with myotonic dystrophy, their family, and friends sharing our personal stories. By educating lawmakers and policymakers on the seriousness of the condition, how it impacts daily living, and how individuals with myotonic dystrophy strive to overcome these challenges, we build awareness and relationships in Washington, D.C. Through our advocacy, we urge Congress to embrace our sense of urgency and make critical investments in biomedical research, medical care, health insurance coverage and protections, and therapeutic innovation.
On the immediate horizon, Congress will complete work on this year’s spending bills following the November election. We continue to closely monitor these efforts and advocate for increased federal funding for myotonic dystrophy research as part of this legislation. As we learn more, we will be inviting MDF advocates to communicate to Congress in support of our research priorities. We will provide updates and sample emails and assist advocates in identifying their Representatives and Senators. We will host quarterly webinars to update the community on our efforts in Washington and provide tools for community members to communicate to our elected representatives.
As we look to next year, in January a new Congress will be sworn in and there will be a president-elect Biden or a second Trump term. These changes will present opportunities to build new relationships in Congress and advance our advocacy objectives. We will be forging ahead with efforts to continue to increase myotonic dystrophy research, pass legislation to strengthen and expand Wellstone Centers, and accelerate efforts to finally bring myotonic dystrophy treatments to market.
Please consider becoming and advocate and sharing your unique story. It will make a significant difference on our efforts to improve the living of every American living with myotonic dystrophy.