2023 Myotonic Dystrophy Foundation Advocacy Week
April 17th - 21st, 2023
MDF invites advocates from across America to email, call, and meet with their U.S. Senators and Representatives during our 2023 Advocacy Week campaign April 17-21st to raise DM awareness and urge Congress to increase federal funding for myotonic dystrophy (DM) research to help us find a cure!
Get Up to Speed with our Rare Disease Month Advocacy Workshop
As the new Congress begins work on the fiscal year 2024 budget that includes important federal biomedical research funding, MDF advocates from across the country will be urging our U.S. Senators to include DM as an eligible research condition under the Peer Review Medical Research Program (PRMRP) for the 7th year in a row. Our advocacy has helped DM researchers secure $16 million in new myotonic dystrophy research funding since our inclusion in the program which has helped advance our understanding of this rare genetic disorder. Together, we are changing the world and improving the lives of everyone living with DM.
Five Days to Make a Difference!
Be the change you want to see in the world for just 10 minutes a day! When we speak up, we influence research funding budgets, the development of new therapies, clinical trial efforts, and initiatives to improve the quality and cost of care for all people living with myotonic dystrophy.
April 17th, Day 1: Learn the Basics & Choose Your Approach
It's easy to learn how to become a successful advocate! By making calls and scheduling meetings, you will make your voice heard and help convince your U.S. Senators to support keeping myotonic dystrophy part of the Senate’s Peer Review Medical Research Program (PRMRP). Prepare for the week ahead by:
- Finding your Senators contact information at https://www.senate.gov/senators/senators-contact.htm
- Deciding your approach. Do you want to request a meeting or simply call/email them a request to support of research advocacy priority?
- Spending a few minutes briefly writing down your personal story of living with or caring for a friend or family member living with myotonic dystrophy.
- Make sure to think about how myotonic dystrophy impacts your daily living and why it’s important that we support research to find treatments and a cure!
- Visit the MDF Advocacy Hub to brush up on the basics in preparation for Day 2!
April 18th, Day 2: Request A Meeting (Virtual or In-Person) with Your Senators & Their Staff
Make sure you have learned the advocacy basics, or refreshed your knowledge, covered on Day 1! Today, MDF advocates should email or call their Senators’ offices to request a meeting to educate them on the many challenges faced by individuals living with myotonic dystrophy and invite them to support our fiscal year 2024 request to maintain myotonic dystrophy research eligibility in the U.S. Senate’s Peer Reviewed Medical Research Program (PRMRP). (Remember, you can find your Senators and their contact information at https://www.senate.gov/senators/senators-contact.htm)
April 19th, Day 3: Share Your Personal Story with Your Senators
Sharing your personal story is the best way to build awareness and inspire change! Some advocates prefer emailing their Senators to share their personal stories and to voice their support for our U.S. Senate Peer Reviewed Medical Research Program (PRMRP) request. (Remember, you can find your Senators and their contact information at https://www.senate.gov/senators/senators-contact.htm) Today MDF advocates are invited to share their personal stories of living with myotonic dystrophy or caring for a friend or a loved one and urging Congress to take action. Click here to for instructions on sharing your story.
April 20th, Day 4: Invite a Friend(s) to Become an Advocate for Myotonic Dystrophy Research
As a rare genetic disease community, we must mobilize all our friends and family members to make our voices heard in Washington, D.C. to ensure 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 we demand action!
Please invite your friends and family to learn more about how they can contact Congress to express their support! Invite them to watch our recent Rare Disease Day Advocacy Webinar to contact their Senators! (Remember, they can find their Senators and their contact information at https://www.senate.gov/senators/senators-contact.htm)
April 21st, Day 5: Use Social Media to Build Awareness and Action!
You’ve requested your Senate meetings, emailed Congress your personal story, and recruited your friends and family to join the cause! On the last day of Advocacy Week, we ask advocates to use social media to amplify our voice and urge support for our PRMRP request. Please visit your Senators’ webpages to find them on Twitter, Facebook, and Instagram, or your preferred Social Media platform, to continue to build awareness and encourage them to support MDF! (Remember, you can find your Senators and their social media accounts at https://www.senate.gov/senators/senators-contact.htm)
Sample Tweet targeting Mr. Sherrod Brown, the Senator from Ohio:
@SenSherrodBrown please support @MyotonicStrong in making myotonic dystrophy research eligible for FY24 Peer Review Medical Research Program for 7th year in a row!