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!

International-DM-Awareness-Day-Logo-800px

Read next...

Ottawa NMD conference poster

Important Deadlines for Ottawa NMD 2023

The Ottawa International Conference on Neuromuscular Disease and Biology (Ottawa NMD 2023) deadline for discounted early-bird registration and abstract submission is June 30th! 

ENMC mid-career mentoring programme

European Neuromuscular Centre Mid-Career Mentoring Programme Now Open

The European Neuromuscular Centre (ENMC) Mid-Career Mentoring Programme is now open for the third round of mentee candidates!

MNI logo

$6 million Brain Canada grant awarded to McGill to develop virtual integrated patient platform

NMD4C are pleased to share that The Neuro has received a $6 million grant from Brain Canada to fund a new Open Science patient registry to share data with researchers around the world and let patients see how their data is used to develop new treatments for neurological disorders.

xr:d:DAFhueqzCxw:6,j:3799255692,t:23050201

CIHR Report: What we heard on the future of clinical trials

The Canadian Institute of Health Research (CIHR) have recently released an article outlining the results of their building the future of clinical trials consultation in a What We Heard report.

NBS-2023

New Publication from NMD4C Investigators: Variability in Newborn Screening Across Canada: Spinal Muscular Atrophy and Beyond

A new study ‘Variability in Newborn Screening Across Canada: Spinal Muscular Atrophy and Beyond’ examines the differences between provincial newborn screening (NBS) programs and the variability of Spinal muscular atrophy (SMA) screening inclusion within these.

Muscular Dystrophy Canada have announced the nine projects funded through their 2023 research grants competition.

Muscular Dystrophy Canada fund nine new projects through 2023 grant program

Muscular Dystrophy Canada (MDC) recently announced the results of their ‘Neuromuscular Clinical and Translational Research Grant Program’, and we are pleased to celebrate the many NMD4C investigators and members who are leading and supporting projects!