The Neuromuscular Disease Network for Canada

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International Myotonic Dystrophy Awareness Day to be Observed September 15th

The Neuromuscular Disease Network for Canada (NMD4C) and Muscular Dystrophy Canada (MDC) are proud to be members of a global alliance of myotonic dystrophy (DM) focused organizations who have united to declare an International Day of Awareness for DM, to be observed on the 15th of September each year. This September will mark the inaugural International Myotonic Dystrophy Awareness Day, and there are many exciting events and activities planned from organizations around the world to recognize this day and raise awareness for DM.

Announced on February 28th to honor International Rare Disease Day 2021, International DM 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.

One of the network’s ongoing activities around International DM Awareness Day has been to advocate for official recognition by governments at both the provincial and federal level. We are happy to share that through the combined efforts of MDC, the NMD4C, and Myotonic Dystrophy Foundation (MDF) Support Group Facilitator and NMD4C Investigator Teresa Buffone, the Province of Manitoba has officially proclaimed September 15th, 2021 to be International Myotonic Dystrophy Awareness Day! We hope to see further proclamations from the federal and provincial levels of government as we continue to advocate for recognition of this day.

MDC will also be hosting a webinar to recognize this year’s International DM Day. Myotonic 101 with Dr. Cynthia Gagnon will introduce the basic facts and latest research about Myotonic dystrophy. This webinar will answer questions such as:

  •         What is Myotonic muscular dystrophy?
  •         What are the symptoms/signs of Myotonic muscular dystrophy?
  •         How is Myotonic muscular dystrophy diagnosed? Prognosis?
  •         What are treatment options?
  •         What about supportive treatments for Myotonic muscular dystrophy?
  •         What research is being done on Myotonic muscular dystrophy in Canada?

Register here for the event!

 

Further information about International DM Awareness Day can be found on the MDF website here. Check out what other organizations have planned for September 15th, and find out how you can get involved!

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