International Myotonic Dystrophy Awareness Day

September 15th

#myotonicDystrophy
#myotonicDystrophyAwareness

Raising DM Awareness can be as easy as wearing green or sharing on social media!
 

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. Click here to read the joint Press Release on the founding of the Global Alliance for DM Awareness.

Light up your local landmarks, monuments, and important buildings in green on September 15th!

In honor of International Myotonic Dystrophy Awareness Day on September 15th, we invite you to request your local landmarks, monuments, and important buildings light up in green! Since the first International DM Awareness Day in 2021, dozens of buildings have lit up in green across the US and the world, including the NY State Capitol building, the Matagarup Bridge in Perth, Australia, windmills in the Netherlands, castles in the UK, and more! This initiative increases DM visibility across communities and social media (not to mention it is a great photo opportunity!). Click here for instructions on how to make your request!

Click here to download the sample letter template!

2023 Shared Areas of Focus

A global alliance of over 57 myotonic dystrophy-focused organizations have, once again, united to celebrate Myotonic Dystrophy Families Day on July 29th, and International Myotonic Dystrophy Awareness Day on September 15th. In addition to its core mission of raising DM awareness among the general population, many members are also leading efforts in two specific areas of focus to maximize impact in 2023: Awareness and education among clinical care teams; Clinical trial readiness for participants. Scroll down to learn about how you can help advance these Shared Areas of Focus. Click here to read the full press release!

1. Awareness and education among clinical care teams

Share the Aneshesia Guidelines with your Care Team
Regardless of the form of DM or the severity of DM symptoms experienced, you can have severe and life-threatening reactions to anesthesia and should be monitored carefully whenever anesthesia is administered. Help improve the quality of care of those living with DM by ensuring your provider knows about this heightened sensitivity to sedatives and analgesics. Click here to download the full guidelines. Click here to download a 1 page Quick Reference Guide. Thanks to our international partners, anesthesia guidelines are also available in Japanese and German:

• Anesthesia Guidelines for Japan: View the Practical Guideline for Dystrophia Myotonica (DM) 2020, © Societas Neurologica Japonica, 2020, Published by Nankodo Co., Ltd., Tokyo, 2020.
• Praktische Hinweise für das Narkose-/Anästhesie Management eines Patienten mit Myotoner Dystrophie Typ 1. Translated in partnership with DGM, the German Society for Muscle Diseases.

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 Educational Video Resources on the MDF Digital Academy
View hours of educational and inspirational videos by DM experts wherever and whenever you would like. Videos are categorized by areas of interest, for example, clinical trials and drug approval, DM2, congenital and childhood onset, and more! Click here to access the MDF Digital Academy. 
 

2. Clinical trial readiness for participants

Watch Industry Updates Part 1 & 2 from the 2023 MDF Annual Conference
Recorded on September 8th & 9th, representatives from biotech and pharma companies provide updates on their drug development efforts in the DM field. Presenters include: Avidity Biosciences, Juvena Therapeutics, Dyne Therapeutics, ARTHEx biotech, PepGen, Harmony Biosciences, Rgenta Therapeutics, AMO Pharma, and Sanofi.

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.

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.

Discover the DM Drug Development Pipeline
Interested in DM drug development efforts? Learn about the current drug development landscape with a pipeline chart and leran more about the incredible number of companies now working in the myotonic dystrophy space! Click here to view the DM Drug Development Pipeline!

Explore the Myotonic Dystrophy Research Map
To increase collaboration and general knowledge across the DM ecosystem, MDF has compiled publicly available research-related information on myotonic dystrophy into a single comprehensive database. To capture the interconnected nature of progress in the DM research ecosystem, we have illustrated the data in a visual network map – an intuitive, holistic, and explorable knowledge-building tool built for professionals and community members alike. Click here to start exploring ongoing DM-focused clinical trials! Click here to learn more about the DM Research Map project.

More Ways to Get Involved!

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

• Share the International Myotonic Dystrophy Awareness Day 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

• Learn how to Advocate for DM Research Funding in honor of International Myotonic Dystrophy Awareness Day on September 15th! 
  As the US Congress advances spending legislation that includes biomedical research funding, MDF will be closely following these proceedings, and as we identify opportunities for advocates to influence this legislation, we will be urging advocates to follow-up with their US Senators and Representatives. We hope you can join us for our fall webinar on Sept. 15 so we can make our voices heard loud and clear in Washington. Together, we can change the world and improve the lives of everyone living with DM. Click here to register for our Fall Advocacy Training!
   
• Ready to be a DM Advocate? 
  Federal funding for myotonic dystrophy (DM) research ranks near the bottom of all federally funded disease research. Today, the federal government spends approximately $9 million on DM research out of a total budget of just over $32 billion at the National Institutes of Health. This translates into approximately $11 per person per year. You, the myotonic dystrophy community, are the most effective in helping make a difference. When you speak up, you influence research funding budgets, the development of new therapies, clinical trial efforts, and initiatives to improve the quality and cost of care. Click here to find the templates, tools, and resources you need to start advocating!
   
• 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

• Myotonic Dystrophy In Motion!
  What started as an idea for MDF activewear by community member Luke Bolt and his family has evolved into the Myotonic Dystrophy In Motion Movement! A new MDF care initiative to unify, inspire, and encourage the international DM community to start moving!
   
  Movement can improve both the physical and mental well-being of people living with myotonic dystrophy. Movement can be as variable as the members of the myotonic dystrophy community, and can include a variety of activities like walking, biking, swimming, yoga, dance, sports, and more! Click here to find all our DM exercise videos and resources!
   

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.
   
• 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!