International Myotonic Dystrophy Awareness Day

International Myotonic Dystrophy Awareness Day

September 15th, 2021

#myotonicDystrophy
#myotonicDystrophyAwareness

Enjoy a special video program honoring and celebrating our global DM community! Hear from some of MDF's volunteer advocates, meet members of the Global Alliance, listen to a performance by singer-songwriter Eric Hutchinson, and get inspired to spread DM awareness!
 

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.

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. Click here to download our Logo Pack. Just need the logo? Click here. (JPG)
   
• 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! Check out MDF's posts at:
  • Facebook
  • Instagram
  • Twitter
  • LinkedIn
     
• 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.
  • Download and print your Window Sign!
  • Customize and share your "Dear Neighbor" Letter.
     
• 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

• Write a Letter to Your Government Official 
  • United States Senate Resolution 336 - On August 4th, U.S. Senators Tim Kaine & Amy Klobuchar introduced congressional resolution S.Res.336 to declare September 15th International Myotonic Dystrophy Awareness Day. 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. Click here to read the full press release on the Congressional Resolution.
     
    We are urging all myotonic dystrophy community advocates to contact your two U.S. Senators to ask them to co-sponsor this historic resolution. Click here to read the full Senate Resolution and track its progress as it becomes available. Ready to act now? Click here for instructions and letter templates to contact your senator.
     
  • International – Start your own campaign for your government to recognize September 15th as International Myotonic Dystrophy Awareness Day. See the full text of the Senate Resolution for ideas on what you might include when contacting your local representatives
     

• 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.
   

Get Active & Stay Healthy

• Adaptive Yoga Online
  Try out seated yoga classes developed by Adaptive Yoga Live. Adaptive yoga is specifically designed for people with disabilities. In their sessions, traditional yoga poses are adapted, so that they can be experienced by everyone - regardless of their level of ability. Check out more at www.adaptiveyogalive.com.
   

Host a Local Fundraiser

• Host a "Miles for Myotonic Dystrophy" Event 
  Use our event template to organize your own fundraising walk, run, or roll for MDF! Click here to download the Miles for DM Toolkit. You can also use this as inspiration to fundraise for your local organization.
   

• Check out Virtual Fundraising Options:  
  Check out MDF's other virtual fundraising ideas. Download the Virtual Fundraising Toolkit for ideas on how to fundraise with your social networks.
   

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. 
   
• Participate in Research
  People living with myotonic dystrophy have been active partners in bringing clinical research to this point, by supporting and participating in studies, joining registries, responding to surveys, and funding patient advocacy organizations. Click here to learn about myotonic dystrophy studies and trials. Find more information on www.ClinicalTrials.gov.
   
• Share your Healthcare Stories with MyPaTH Story Booth
  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. Click here to learn more about MyPaTH Story Booth. Have questions? mystory@pitt.edu.
   

For Healthcare Providers

• Download and share our Clinical Care Guidelines 
  Give your patients living with DM the best care by downloading and using the Clinical Care Guidelines and Recommendations for DM1 and DM2, toolkits, and anesthesia guidelines. Share them with your medical associations, instituions, and colleagues, and encourage them to do the same. Click here to access the DM resources available. Looking for video resources? Click here to find recordings of presentations and programs by DM experts. 
   

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

• August 4th, 2021 - United States Senate Resolution 336 Introduced
  On August 4th, U.S. Senators Tim Kaine & Amy Klobuchar 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. 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. Click here to read the full press release on the Congressional Resolution.
   
• July 24th, 2021 – International Myotonic Dystrophy Family Day
  In addition to the International Myotonic Dystrophy Awareness Day in September, we will continue to celebrate the annual International DM Family day in July. Those living with DM sometimes feel isolated and overwhelmed. The Family Day is for the community to come together to support each other in a day of fun, to share stories and experiences within groups, a day to meet up with others and feel part of something bigger. Click here to see how we have celebrated in the past and for ideas on how you can join in for 2021.
   
• June 17th, 2021 - 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.
   
• February 28th, 2021 - 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.

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.