Rare Disease Month: Take Action to Increase DM Research Funding

In 2017, Myotonic advocates across the country urged their Senators to add myotonic dystrophy to the list of eligible conditions as part of a special Defense Department biomedical research program. The program established in 1999 and called the Peer Reviewed Medical Research Program (PRMRP) has funded millions of dollars in new research in areas including rheumatoid arthritis, spinal muscular atrophy, diabetes and other muscular skeletal disorders. Our 2017 campaign was successful in convincing the United States Senate to add myotonic dystrophy to the PRMRP and this has resulted in scientists being awarded over $6 million for new myotonic dystrophy research projects.

To continue this progress and increase myotonic dystrophy research funding, we need your help!

Please contact your Senators during the month of February which concludes with Rare Disease Day on Friday, February 28th to urge them to include myotonic dystrophy to the PRMRP as part of the Fiscal Year 2021 Defense Appropriations bill. Here’s what you need to do:

  1. To locate your Senators and visit them on the internet to submit your comments, please visit www.senate.gov. At the top left-hand corner of the website, you will find a dropdown menu of states. From there you can find your Senators websites where you can submit your comments.
  2. Additionally, we have drafted a sample email below that advocates can use to communicate to your Senators. Please take a few minutes to personalize your email with information about how myotonic dystrophy affected you and your family and friends.

 

Sample Email

February 28, 2020

Dear Senator [Your Senator's Name]:

As we recognize Rare Disease Day, I write to ask for your support for the continued inclusion of myotonic dystrophy on the list of eligible conditions under the Department of Defense Peer Reviewed Medical Research Program as part of the Fiscal Year 2021 Appropriations bill. Myotonic dystrophy is a rare and serious genetic disorder that effects multiple organ systems including the heart, lungs, muscles, brain and gastrointestinal system.

The Senate first added myotonic dystrophy to the PRMRP as part of the Fiscal Year 2018 Defense Appropriations bill and since its inclusion myotonic dystrophy researchers have been awarded over $6 million in new funding. There are no FDA approved treatments for myotonic dystrophy and this research is critically important as part of our efforts to find effective therapies and someday a cure.

As a constituent and volunteer with Myotonic, the country’s largest myotonic dystrophy patient advocacy organization, I urge you to ask Senators Richard Shelby and Richard Durbin, the Chair and Ranking Democrat on the Senate Appropriations Subcommittee, to continue to include myotonic dystrophy in the PRMRP.

Thank you for your kind attention to this request and I look forward to your reply.

Sincerely,

[Your Name]

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