Rally Support for the International Myotonic Dystrophy Awareness Day US Senate Resolution

On August 4th, U.S. Senator Tim Kaine (VA) introduced congressional resolution S.Res.336 to declare September 15th International Myotonic Dystrophy Awareness Day. We are urging all myotonic dystrophy community advocates to contact your two U.S. Senators to ask them to co-sponsor this important resolution. Click here to read the full Senate Resolution and track its progress as it becomes available.    

This public recognition of the myotonic dystrophy community will help increase research funding, improve medical care, and accelerate the discovery of needed treatments and a cure.

MDF is incredibly grateful to Senators Amy Klobuchar (MN), Tina Smith (MN), Susan Collins (ME) and Cynthia Lummis (WY) for co-sponsoring this historic resolution!

Click here to read MDF's press release on the Resolution and its impact.

Ready to act now? Follow the instructions below on how to identify and contact your senators. Click here to download a PDF of these instructions.

 

Write a Letter to Your Senator

Senator Kaine needs our help to build broad support by contacting our U.S. Senators and talking to them about the challenges faced by people living with the DM. The more U.S. Senators that co-sponsor this resolution, the higher likelihood it has of passing.

There are 3 ways you can contact your U.S. Senators and ask them to co-sponsor the resolution:

1. Email

2. Regular Mail

3. Phone

Bonus: Everyday more Senators are publicly interacting with their constituents on social media platforms like Facebook and Twitter.

 

Identify Your Senators

1. Visit https://www.senate.gov/senators/senators-contact.htm
2. Select your state in the first dropdown that says “Choose a state”. (See example below) 

1. Email

Advocates can email their Senators through their web portals to urge support for the resolution. 

1. Visit your senators’ contact pages. After selecting your state on the dropdown menu, you will be redirected to your state’s page that lists your senators and their contact info. Select the blue “contact” button above your senators’ addresses. (See example below) 

2. Send your message! After clicking the “contact” button, you will be redirected to a contact page for your chosen senator. As an example, below is California Senator Dianne Feinstein’s email contact page on her official website. (See example below)
   

   1. Fill in your contact information.  

   2. You may be required to choose a topic. We recommend you choose “Health” or something similar.  

   3. Download our support email template. Customize your letter by replacing the yellow highlighted sections with your information and adding further personal details.

      Feel free to compose your own message as well, as long as you include the Resolution name and number, "S.Res.336 declaring September 15th International Myotonic Dystrophy Awareness Day". We encourage everyone to personalize their messages in some way to provide a little information of your experience living with or caring for a loved one or friend with myotonic dystrophy.   

   4. Copy-paste your letter into the Message section (and Message Subject if required).  

   5. Hit “Submit”!

3. Repeat the steps above for your second senator!

 

2. Regular Mail

Advocates can write physical letters to their senators urging support for the resolution.

1. Download, Customize, Print and Sign your letter 

   1. Download our support letter template and replace the yellow highlighted sections with your information.  

   2. Customize this letter with any further personal information you may want to add. 

   3. Print and sign your letter 

2. Send your letters to your senators 

   Use the below address to mail them your letters:

   The Honorable (Senator’s Full Name)
   United States Senate
   Washington, D.C. 20510 

 

3. Phone Call

Advocates can call their senators and urge support for the resolution.

1. Call your senator! The easiest way to call your senators is to contact the U.S. Capitol Switchboard operator at (202)-224-3121.  They will happily connect you directly with your senators’ offices. Given COVID precautions and remote working, you may be asked to leave a voice mail message.

2. Suggested talking points to help guide your calls:   
    

• My name is JANE DOE and I am a constituent who lives in TOWN, STATE.   
   

• My address / email address is ___________  (Note: Please give a full mailing address or email so they can respond to your request.)
   

• I have myotonic dystrophy / my family member or friend is living with myotonic dystrophy.   
   

• Explain your experience with myotonic dystrophy and why you think it’s important to raise awareness, or use the following script:

  “Myotonic Dystrophy is a rare and complex genetic disorder that impacts an estimated 1 in 2,100 people or over 150,000 Americans.  There are no FDA approved treatments and it is difficult to diagnose.  It can cause skeletal muscle problems, heart function abnormalities, breathing difficulties, cataracts, issues with speech and swallowing (dysarthria and dysphagia), cognitive impairment, excessive daytime sleepiness, and diabetic symptoms."
   

• I’m asking Senator [YOUR SENATOR’S NAME] to co-sponsor Senator Tim Kaine’s resolution,S.Res.336 declaring September 15th International Myotonic Dystrophy Awareness Day.
     

• Thank you for your support and I look forward to receiving a reply from the senator. 

 

Click here to follow the bill’s progress and read the full text of S.Res.336 as it becomes available!