International Myotonic Dystrophy Awareness Day

International Myotonic Dystrophy Awareness Day

September 15th, 2021

Join the Global Alliance to raise awareness of myotonic dystrophy!

Time Remaining!

 

International Myotonic Dystrophy Awareness Day aims to garner the attention of the wider general public, policy makers, regulators, biopharmaceutical representatives, researchers, health care professionals, and anyone with an interest in changing the future of myotonic dystrophy. Raising awareness of myotonic dystrophy will help improve service provision, basic research, drug development, and policymaking related to the disease. Increased funding for myotonic dystrophy research will improve health outcomes, reduce disability, and increase life expectancy for individuals living with the disease, and holds great promise for helping individuals with diseases with similar genetic bases, such as Fragile X syndrome and Huntington’s disease.

Read the joint Press Release here and explore more about the Global Alliance members below.

 

 

Highlights

Important Dates

United States Senate Resolution

We have been working with Senate Staff and Legislative Counsel to draft legislation for Senator Kaine to introduce as a Senate Resolution declaring September 15th as International Myotonic Dystrophy Awareness Day. Starting mid-July, we’ll need your help on a nation-wide letter-writing campaign asking your senators to co-sponsor this resolution! More details on the letter-writing campaign to come soon. 
 

 

Here's How You Can Get Involved!

Share International Myotonic Dystrophy Awareness Day with your Friends, Family & Local Community.

  • Share the logo!
    Share the community designed logo with your friends and family when you talk with them about International Myotonic Dystrophy Awareness Day. Download the Logo Pack here.
     
  • Social Media Campaign
    During the month of September, post DM facts and your experiences on social media to help people understand more about the disease. We will share sample posts that you can re-post to your accounts. Download the Social Media Toolkit!
     
  • Window Sign Campaign
    Raising awareness and encouraging conversations about myotonic dystrophy in our communities is vitally important. To build these bonds we have started a Window Sign campaign where your friends, family, and local community can publicly show their show their support for myotonic dystrophy awareness. Click here for instructions on how you can participate.
  • Awareness T-Shirts & Mugs
    To provide additional ways to share your support for International Myotonic Dystrophy Awareness Day, we are offering branded T-Shirts and mug. We hope these promotional items can help start conversations about myotonic dystrophy with your doctors, friends, and even people on the street. Check back for new styles over the next month! Click here to visit the virtual store and get your DM Awareness Day Swag!
     

Raise Awareness with Advocacy

  • Light Up Your Local Monument or Landmark
    Join us in campaigning to light up your local monuments or landmarks in green on International Myotonic Dystrophy Awareness Day on September 15th. For example, MDF has submitted an application to light up the Empire State Building, and some MDF community members are working on lighting up Corning Tower in New York’s Capitol. Other examples include prominent buildings, bridges, and signs. Download sample language to include in an application.
     
  • Write a Letter to Your Government Official - Coming soon 
  • DM Quick Reference Sheet
    Spend the month of September talking to your community about myotonic dystrophy and your individual experience with it. Share our 1-page DM Quick Reference Sheet to help you share DM facts and your experiences easily. Download your copy in Full Color or Green. Click here to access the web version of Myotonic Dystrophy At A Glance.
     

Host a Local Fundraiser

Contribute to the DM Medical Field

  • Join the DM Family Registry 
    If you’ve been diagnosed with DM1 or DM2, including congenital or juvenile onset, or are the primary caregiver for some who has, we need you! By participating in the Registry you can help researchers from industry and academia identify potential clinical trial participants and research study subjects, and increase understanding of the impact and complexity of this disease. Click here to join the Myotonic Dystrophy Family Registry. Looking for more international opportunities? Click here to find other myotonic dystrophy registries across the globe.
     
  • Share Clinical Care Guidelines with your Healthcare Provider 
    Help your healthcare providers give you the best care by sharing the Clinical Care Guidelines for DM1 and DM2, toolkits, and anesthesia guidelines with them. They are available in multiple languages. Physical therapy, exercise, nutrition, and other guides posted as well. Click here to access the DM resources available. 
     
  • Share your Healthcare Stories with Story Booth Coming soon 
    Share your healthcare or diagnosis stories with Story Booth, an independently operated research database from the University of Pittsburgh and Johns Hopkins University dedicated to bringing together patients and researchers who are interested in improving health and health care. Partnership information coming soon. 

     

For Healthcare Providers

For Organizations

  • Join the Movement!
    If you are a group, organization, hospital, academic institution or company interested in officially joining the Global Alliance to raise awareness of myotonic dystrophy and would like to add your name and logo to the team, please complete this form.
    If you are a community member interested in helping raise awareness of the disease, please click the logo of the organization below that is closest to your geographic area to learn how they are promoting International Myotonic Dystrophy Awareness Day and how you can get involved!
     

 

Recent News

  • Community Logo Design Contest Winner Announced and Logo Launched ​​​​​​
    Thank you to all our artistic, creative community members who submitted a design and voted in the contest. The Global Alliance is proud to announce Alexandra LeBoeuf as the winner of the International Myotonic Dystrophy Awareness Logo Design Contest! Her design won the competition with a majority of votes from over 22 countries. Alexandra briefly shared her story with a local Canadian newspaper after she was selected as a top 5 finalist. We hope everyone in our global community can rally around this beautiful logo and use it to help signify the day! Learn more about Alexandra, her family, and the inspiration behind her logo.
     
  • International Myotonic Dystrophy Awareness Day Declared September 15th
    In honor of Rare Disease Day 2021, a Global Alliance of myotonic dystrophy-focused organizations have united to announce the declaration of International Myotonic Dystrophy Awareness Day to be observed each September 15th. Click here to read the full press release.
     

 

Our Global Alliance

Members listed alphabetically by country. An * indicates a founding member of the Myotonic Dystrophy Awareness Global Alliance.

Australia - MDA Australia*

 
 

Denmark - Muskelsvindfonden*
 

Europe - Euro-DyMA*
 

 

France - AFM-Téléthon*
 

 

Netherlands - Stichting MD (Nederland)*
 

 

Netherlands - Spierziekten Nederland*
 

 

United Kingdom - Cure DM Myotonic Dystrophy UK*
 

 

United Kingdom - Muscular Dystrophy UK*
 

 
 

USA - AskBio
 

 

USA - Dyne Therapeutics
 

 
 
 

USA - PepGen
 

 

USA - University of Utah
 

 

An * indicates a founding member of the Myotonic Dystrophy Awareness Global Alliance.

If you are a group, organization, hospital, academic institution or company interested in officially joining the Global Alliance to raise awareness of myotonic dystrophy and would like to add your name and logo to the team, please complete this form.

 

Date(s): 
Wednesday, September 15, 2021

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