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.

 

 

  • 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.

Neuromuscular Awareness September

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imPORTND Patient-Oriented Research Training for Neuromuscular Disease Seeks Research Teams for Testing

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2023 Myotonic Dystrophy Foundation Early Career Research Grant

The MDF will issue up to two two-year awards of up to $380,000 at $190,000 per award for early career scholars in the DM field for projects that focus on basic, translational and/or clinical research or care projects in myotonic dystrophy.

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NMD4C Hire Research Software Developer

The NMD4C are pleased to announce the hiring of research software developer Kevin LaFleur as the most recent addition to the network’s biobanking team! Kevin will develop the technical infrastructure for a centralized Canadian neuromuscular biobanking catalogue.