MDF Advocacy Week

Myotonic Dystrophy Foundation Advocacy Week
May 2nd - 6th, 2022

Advocates from across the United States will be meeting virtually with their members of Congress and staff urging them to continue DM federal 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 NIH research effort focused on DM and related repeat expansion diseases. To date through our advocacy efforts, we have secured an additional $7.7 in new DM research projects through the PRMRP program with more grants expected in the coming year. Click here to read more about the newly formed National Advocacy Committee.

Click here to learn more about MDF's advocacy efforts.

Questions? Please contact Kevin Brennan, MDF’s advocacy consultant, if you have any questions and to let us know if you were able to schedule virtual meetings and email notes of support for our research advocacy objectives. Kevin can be reached at  

Five Days of Action!

Monday, May 2nd - Watch our Advocacy Training Webinar & Get Ready for MDF Advocacy Week!

Watch the MDF Advocacy Week Webinar that provides background on our research funding requests, instructions on how to contact your Senators and Representatives to set-up a virtual meeting or send an email request for support, lead a successful congressional meeting, and guidance on following up on our requests for support. Please be sure to share with friends and family who are interesting in helping to build awareness and urge Congress to support MDF. 

Watch our Advocacy Training Webinar!

Tuesday, May 3rd - Ask to Meet Virtually with Your Senators, Representatives, & Their Staff

Now that you’ve learned the advocacy basics, today we encourage MDF advocates to contact your Senators and Representatives and request a virtually meeting to educate Congress on the challenges facing individuals living with myotonic dystrophy and inviting them to join us in increasing federal support for research. You can find all the necessary instructions for requesting a congressional meeting including our written congressional requests to establish a new National Institutes of Health Repeat Expansion Disease Initiative (REDI) that will increase myotonic dystrophy research funding and establish a new $10 million peer-reviewed myotonic dystrophy research program as part of the Congressionally Directed Peer Reviewed Medical Research Program. Find detailed instructions on how to contact your representatives below.

Download the Congressional Requests!

Wednesday, May 4th - Share Your Personal Story & Email Your Senators and Representatives Urging Support for MDF Advocacy Priorities

Some advocates many be more comfortable emailing their Senators and Representatives and others may want to follow-up on their meeting requests by emailing their support for our advocacy priorities. Today is the day for MDF advocates to share their personal stories of living with myotonic dystrophy or caring for a friend of loved and urging Congress to take action. You can find instructions on how to contact your representatives below. Click here to download a draft letter to your representative. Don’t forget to share your personal story – that is the best way to build awareness!

Download the Letter Template!

Thursday, May 5th - Invite a Friend(s) to Become an Advocate for Myotonic Dystrophy Research

As a rare genetic disease, we must mobilize all of our friends and family members to make their voices heard in Washington, D.C. so that we get our fair share of limited federal research funding. Myotonic dystrophy remains one of the least funded rare genetic disorders and this will only change if more and more MDF advocates demand action. Please invite your friends and family to learn more about how they can contact Congress to express their support. Please invite them to watch the Webinar or visit this page to learn how they can help.

Share on Facebook | Share on Twitter | Share on LinkedIn | Share via Email

Friday, May 6th - Tweet for a Myotonic Dystrophy Cure!

Now that you’ve requested a congressional meeting, emailed Congress, and invited your friends and family to join the cause, we encourage advocates on the final day of Advocacy Week to use social media to encourage Congress to support our cause. Please visit your Senators and Representatives’ webpages to find them on Twitter, Facebook, and Instagram to continue to build awareness and encourage them to support MDF! Find instructions on how to locate your representatives social media.

Example Tweet: @SenSherrodBrown please support @MyotonicStrong advocacy priorities - @CDMRP funding & new @NIH repeat expansion initiative. #myotonicDystrophy #MDFAdvocacyWeek

How to Contact Your Representatives

Find step by step instructions on how to identify and contact your representatives. These steps are crucial for scheduling a virutal meeting with or emailing your representative & their staff about MDF Advocacy Priorities.

  1. Find your representative! Visit to look up your Senators and Representative. Type in your home address in the right hand side “Contact Your Member” look up. 


  2. Choose your first contact! You will be directed to a page that lists your Senators and Representative. From there you can click on the links to each Member which will take you to their individual websites. 


  3. Navigating to their Contact Page! This will direct you to the Senator or Representative’s website where you can access their form to request a virtual meeting or to share your MDF advocacy request. In this example from Representative Barbara Lee’s office the “Contact Me” & "How Can I Help You" options are center bottom. Many times the “Contact” option to request a meeting is located at the top right. 


  4. Request your meeting! If you wish to request a meeting, below is a sample email template that you can use to complete the request forms. For those prefer to email their representative, please download this draft template. Advocates can also call their Washington offices using the numbers listed on the website. Please be sure to replace all the bolded sections with your own information:

My name is [Your First & Last Name] and I am from [Your City, Town, and State] and on behalf of the Myotonic Dystrophy Foundation. I am writing to request a meeting with Senator/Representative [Last Name] or their staff to discuss our requests for support for increased federal funding for myotonic dystrophy research. Specifically, we are requesting support for the inclusion of report language in the fiscal year 2023 Appropriation legislation to provide funding for peer-reviewed myotonic dystrophy research as part of the Department of Defense’s Congressionally Directed Medical Research Program and a new National Institutes of Health Repeat Expansion Disease Initiative to study genetic disorders like myotonic dystrophy and related conditions. Thank you for your kind attention to my request and I look forward to your reply.

  1. Report back to MDF! Please contact Kevin Brennan, MDF’s advocacy consultant to let us know if you were able to schedule virtual meetings and email notes of support for our research advocacy objectives. It is important that we document all of these meetings and emails so we can follow-up with these congressional offices as the budget process advances. Kevin can be reached at


- Add to Calendar 2022-05-02 00:00:00 2022-05-06 00:00:00 MDF Advocacy Week To know more about this Event, Just go to: Location Myotonic Dystrophy Foundation America/Vancouver public