MDF Advocates Unite to Increase DM Research Funding

MDF Advocates from Across America Urge Congress To Increase Research Funding to Cure Myotonic Dystrophy

Myotonic Dystrophy Foundation (MDF) advocates from across America participated in our first Advocacy Week campaign the first week in May to urge our Representatives and Senators in Congress to increase federal funding for myotonic dystrophy (DM) research to help us find a cure. The campaign was led by the MDF’s new National Advocacy Committee (NAC) and included a suggested action each day of the week. 

Rebecca Coplin from Oregon, a MDF NAC member and hospital executive, whose family is living with DM said, “Myotonic dystrophy remains one of the least funded rare genetic disorders.  Advocacy Week is an important part of our work to get Congress’ attention so we can increase federal research funding to find treatments and a cure.  They need to hear about our experiences to understand how important this is – it makes a difference. ” 

A Week of Action!

The week started on Monday, May 2nd with advocates invited to prepare for their virtual meetings with their Senators, Representatives, and their staff by reviewing the MDF Advocacy Week webinar that provided instructions on how to request meetings and send emails to Congress in support of our research funding requests. Advocates who visited were able learn about our campaign to obtain, for the 6th year in a row, DM research funding through the Department of Defense Peer Reviewed Medical Research Program (PRMRP), secure new DM research funding as part of the Congressionally Directed Medical Research Program (CDMRP), and initiate a new National Institutes of Health (NIH) research effort focused on DM and related repeat expansion diseases. 

On Day Two advocates made phone calls and sent emails to their congressional representatives requesting meetings to increase awareness of the challenges facing individuals living with myotonic dystrophy and urge Congress to take action in support of a cure. On Day Three advocates were encouraged to call or email their Representatives and Senators to share their personal stories and urge support for our research funding priorities. 

Day Four was all about reaching out to friends and family members and inviting them to join us in speaking with a louder and unified voice to ensure that we get our fair share of limited federal research funding. We concluded Advocacy Week with a social media campaign we called “Tweet for a Cure.” Advocates from across the country used social media to encourage Congress to support our cause on Twitter, Facebook, and Instagram to continue to build awareness and encourage Congress to support our advocacy priorities. 

“Over the past six years, MDF has succeeded in securing new research DM funding, partnered with the FDA on efforts to accelerate new drug development for DM, and convinced the Social Security Administration to make it easier for families with congenital DM to apply for disability benefits,” said Martha Montag Brown, MDF Vice Chair and NAC member from California. “Our goal is to increase the number of MDF advocates urging Congress to support our priorities every year as part of Advocacy Week.”

Use Your Voice to Change the World for People Living with Myotonic Dystrophy

As Congress advances spending legislation that includes biomedical research funding, we will be closely following these proceedings, and as we identify opportunities for MDF advocates to influence this legislation, we will be urging advocates to follow-up with their US Senators and Representatives. In the fall, Congress is expected to finalize the budget and we will host another MDF advocacy webinar on International Myotonic Dystrophy Awareness Day on September 15th. We hope you can join us for our fall webinar (Register Here!) so we can make our voices heard loud and clear in Washington. Together, we can change the world and improve the lives of everyone living with DM. 

Register Now!

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