International Myotonic Dystrophy Awareness Day

International Myotonic Dystrophy Awareness Day

September 15th

#myotonicDystrophy
#myotonicDystrophyAwareness

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

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

Join MDF for a DM Advocate Training Webinar on Sept 15!

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.

2022 Shared Areas of Focus

A global alliance of over 50 myotonic dystrophy-focused organizations have, once again, united to celebrate Myotonic Dystrophy Families Day on July 23rd, 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 2022: 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 2022 MDF Annual Conference
Recorded on September 9th & 10th, representatives from biotech and pharma companies provide updates on their drug development efforts in the DM field. Presenters include: Avidity Biosciences, Dyne Therapeutics, Harmony Biosciences, GrittGene Therapeutics, AMO Pharma, Juvena Therapeutics, PepGen, ARTHEx biotech, Entrada Therapeutics, and NeuBase Therapeutics.

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!
   

Recent News

• July 23rd, 2022 - Global Alliance for DM Awareness Announces Areas of Focus for 2022!
  A global alliance of over 50 myotonic dystrophy-focused organizations have, once again, united to celebrate Myotonic Dystrophy Families Day on July 23rd, 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 2022. Click here to read the full press release.
   
• September 15th, 2021 - The World Celebrates International Myotonic Dystrophy Awareness Day!
  People from all across the world celebrated and honored the myotonic dystrophy community by wearing green, lighting up moments, and starting conversations with their family, friends, doctors, and representatives! We hope you enjoy our special video program showcasing the 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! Click here to watch the full broadcast.
   
• 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.