MDF Advocate Training - Feb 2021

MDF Advocate Training

Presented on February 8th, 2021 by Kevin Brennan, Bluebird Strategies.

As we embark on the new year, the Myotonic Dystrophy Foundation is preparing to launch an ambitious new advocacy agenda. We will begin our 2021 advocacy campaign by inviting the myotonic dystrophy community to join us on February 28th for Rare Disease Day. During Rare Disease Day and throughout the month of February, advocates from across the country contact their congressional representatives to educate them on the challenges facing individuals with rare diseases like myotonic dystrophy, and urge them to take action to help us realize our goals for cures, treatments, and improved medical care.

To prepare for Rare Disease Day, the Myotonic Dystrophy Foundation advocacy team is hosting a webinar on February 8th to review our advocacy priorities, and assist advocates in understanding how to contact your congressional representatives. We will help advocates figure out how to contact their Senators and Representative’s offices to request a virtual meeting, how to participate in a successful virtual meeting with congressional staff, and how to develop a productive longer-term relationship with your elected officials.

Click here to read more about MDF's plans for 2021.

Click here to learn more about previous advocacy efforts and how to get involved.

2021 Advocacy Resources

  • Talking Points. Instructions on contacting Congress and talking points for the meetings.
  • MDF Advocacy Priorities. Background document and MDF congressional requests that should be shared with staff during and after congressional meetings.
  • Sample Letter to Congress. A template for advocates who would prefer to email or send a letter to Congress.
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