New CIHR-funded Burden of Inherited Neuromuscular Disease (BIND) Study: Assessing the Indirect Socio-Economic Burden of Inherited Neuromuscular Diseases
Led by NMD4C steering committee member Dr. Jodi Warman Chardon, this project has been awarded $449,030 over a 3-year period. The project’s goal is to assess the social and economic burden of Canadians living with neuromuscular disorders by using web-based surveys to assess quality-of-life, healthcare resource use, work productivity, and effect on schooling and careers.
Please share this study opportunity with those affected by NMDs and their families within your network!
More information about this project is available at here.
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Zolgensma® Safety Update and CPNG Guidance for Families
The Canadian Pediatric Neuromuscular Group (CPNG) has issued a statement for families regarding recent reports of tumours in children treated with Zolgensma® (onasemnogene abeparvovec) gene therapy for spinal muscular atrophy (SMA). The statement outlines current evidence, considerations for follow-up care, and information for families and healthcare providers.
Could You Be Our Next Awardee? Meet Jules Granet, NMD4C’s 2026 Publication of the Year Awardee
Nominations are open till by 18 January 2027!
In 2026, Jules Granet, a PhD Candidate at McGill University and trainee in Dr. Natasha Chang’s laboratory received an NMD4C Publication of the Year Award for research investigating how muscle stem cell dysfunction contributes to impaired muscle regeneration in Duchenne muscular dystrophy. Nominate yourself or a neuromuscular colleague whose research, clinical care, leadership, advocacy, or community contributions deserve to be recognized.
Early Bird Registration Now Open: 8th Ottawa International Conference On Neuromuscular Disease & Biology
We are happy to announce that early bird registration is now open for the 8th Ottawa International Conference On Neuromuscular Disease & Biology which will be held on October 14-16, 2027 at the Fairmont Château Laurier in Ottawa, Canada. Now under the leadership of NMD4C Investigators; Dr. Mireille Khacho, Dr. Hanns Lochmuller, Dr. Bernard Jasmin, and Dr. Rashmi Kothary.