Neuromuscular Awareness Events September Roundup
September is a busy month for neuromuscular disease awareness with several awareness days as well as month-long campaigns taking place. Take a moment to learn about the different events that took place during September, and how different organizations and individuals raised awareness, educated, and took action for these different NMDs.
Duchenne Awareness Month and World Duchenne Awareness Day
The Government of Canada recognized September 7 as World Duchenne Awareness Day (WDAD) and declared the month of September as Duchenne Awareness Month across the country. Jesse’s Journey hosted a 30-day social media challenge, and the Duchenne community answered the call by reaching monumental levels of awareness for this rare disease. Learn more about the success of this program, along with a recap of the WDAD highlights here.
Newborn Screening (NBS) Awareness Month
September marks NBS month, during which MDC issued its second and final call for proposals to add Spinal Muscular Atrophy to NBS panels. The call is still open, and you can learn more here.
International Myotonic Dystrophy Awareness Day
In honour of Rare Disease Day 2021, a global alliance of myotonic dystrophy-focused organisations have, for the first time, united to announce the declaration of International Myotonic Dystrophy Awareness Day to be observed each September 15th. As members of the global alliance, discover how the NMD4C and its partners engaged in this year’s event.
- Through the combined advocacy 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.
- Muscular Dystrophy Canada hosted a one-hour webinar ‘Myotonic Dystrophy 101’ presented by NMD4C investigator Dr. Cynthia Gagnon, which introduced the basic facts and latest research about Myotonic dystrophy. You can find a recording of this webinar here.
- The Myotonic Dystrophy Foundation aired a Special Program on September 15th, to honor and celebrate the global DM community. You can watch the full, one-hour recording here.
The NMD4C would also like to recognize the achievement of Alexandra LeBoeuf, the Canadian winner of the International DM Awareness Logo Design Contest! Read more about Alexandra and her logo design here.
Limb-girdle Muscular Dystrophy (LGMD) Awareness Day
LGMD Awareness Day is intended to be an annual collaborative effort to globally raise awareness and knowledge of individuals living with limb-girdle muscular dystrophy and this September 30th, 2021 saw the seventh annual worldwide celebration of the event.
To celebrate LGMD Awareness Day, Muscular Dystrophy Canada prepared some fast facts about LGMD:
Charcot-Marie Tooth (CMT) Disease Awareness Month
This September marked CMT awareness month, an opportunity to educate the world about this disease which affects three million people worldwide.
Muscular Dystrophy Canada’s annual Walk4CMT took place in September and in addition to raising awareness about and for the CMT community, they are excited to share that the event exceeded its fundraising goal, raising over $100,000! These funds will continue to support the work of MDC with the CMT community, specifically investing in research and supporting Canadians with CMT with programs and services (e.g., System Navigation). Watch a recording from September 18th’s live Walk4CMT event, featuring stories from the CMT community, updates from researchers and much more. The recording is available here.
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We are excited to share that the 2026 Neuromuscular Clinical Fellowship Awards have been awarded! These fellowships strengthen clinical training in neuromuscular medicine and help prepare the next generation of specialists who will advance neuromuscular care across Canada.
NMD4C Launches Clinical Summer School
We are excited to announce our inaugural Clinical Summer School, happening in Ottawa, Ontario on September 10–11, 2025. The event will feature hands-on workshops designed to complement the NMD4C Royal College–accredited National Neuromuscular Lecture Series and foster engagement among fellows.
New BIND Study Highlights Financial Burden of Neuromuscular Disorders
Celebrating the Publication of the BIND Study.
We are delighted to share that the BIND study, “Financial Toxicity and Its Determinants in Individuals Living With Neuromuscular Diseases,” has been published in Neurology (2025). This is the first of its kind in Canada to document the true costs of living with neuromuscular diseases
National Training Standards Approved for AFC in Neuromuscular Medicine
We’re pleased to announce that the Royal College of Physicians and Surgeons of Canada has granted final approval for the National Training Standards for the Area of Focused Competence (AFC) in Neuromuscular Medicine!
Expanding National Clinical Outcome Assessment Capacity with Train(e)d
NMD4C and MDC have launched Train(e)d. This initiative is part of NMD4C’s broader efforts to build national capacity in outcome measures and natural history research in support of consistent and high-quality clinical assessments across Canada.
Announcing the 2025 Collaborative Research Training Award Recipients!!!
We are excited to announce the recipients of the 2025 NMD4C Collaborative Research Training Awards which supports Canadian trainees in their efforts to advance neuromuscular disease research while strengthening national collaboration among neuromuscular research laboratories.