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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NMD4C Launch Canadian Neuromuscular Clinical Trial Network
We are thrilled to announce the launch of a Canadian neuromuscular clinical trial network (CTN) as a part of our clinical research work.
Training Session for Physiotherapists and Occupational Therapists on Outcome Measures in Spinal muscular atrophy hosted by Quebec SMA Network
This past March 23, the Quebec SMA Network (Réseau québécois de l’amyotrophie spinale – RQAS) in collaboration with the NMD4C and Muscular Dystrophy Canada (MDC) hosted an interactive training session for French-speaking physiotherapists and occupational therapists on assessment measures and practices for Spinal muscular atrophy (SMA). This training gathered clinicians to train and discuss SMA standardized outcome measures and work through current problems/challenges, to improve how these measures often tied to drug reimbursement are conducted.
MDC Announce Recipients of 2024 Neuromuscular Clinical and Translational Research Grants
Muscular Dystrophy Canada (MDC) recently announced the recipients of its annual Neuromuscular Research Grants competition. Through these grants, MDC is investing $900,000 into clinical and translational research projects.
SMA Outcome Measures Training for Physiotherapists and Occupational Therapists
To support the development and training on validated NMD outcome measures we are pleased to provide opportunities for physiotherapists and occupational therapists to attend training sessions for outcome measures.
Congratulations to the 2024 NMD4C Early Career Awards Recipients
We are excited to announce the recipients of the 2024 NMD4C Early Career Awards! This is the second year of our annual award program, celebrating excellence and contribution to the neuromuscular field from early career investigators across both clinical and basic science streams.
MICYRN Secures $20 Million Grant from CIHR for a Pediatric Rare Disease Clinical Trials and Treatment Network
The NMD4C are excited to share that MICYRN’s success in securing a $20 million grant from CIHR Institute of Genetics to support the development and execution of RareKids-CAN: Pediatric Rare Disease Clinical Trials and Treatment Network.