The Neuromuscular Disease Network for Canada


Current state of spinal muscular atrophy in Canada: Practical considerations for clinicians | Webinar report

In partnership with Muscular Dystrophy Canada (MDC), NMD4C delivered its first webinar on April 21, 2020. The topic was the current state of spinal muscular atrophy (SMA) in Canada, with a target audience of neurologists, scientists, physicians, medical trainees/students, and other allied healthcare professionals involved in the care of patients with neuromuscular disease (NMD). The goal was to share knowledge on best practices, current issues, disease diagnosis and management, and possible therapeutic interventions.

Read the webinar report HERE

Topics and speakers:

SMA Clinical Care in the Era of COVID-19

Dr. Jodi Warman Chardon (NMD4C Steering Committee member)

Newborn Screening in Ontario

Dr. Kristin Kernohan, Dr. Alex Mackenzie, Dr. Hugh McMillan (NMD4C Investigator)

Update on Zolgensma for Canada

Dr. Hugh McMillan (NMD4C Investigator)

Update on Risdiplam for Canada

Dr. Craig Campbell (NMD4C Investigator)

Adult Outcome Measures

Dr. Colleen O’Connell

Update on CNDR-SMA Project

Dr. Lawrence Korngut (NMD4C Investigator), Dr. Victoria Hodgkinson (NMD4C Collaborator)

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Letter to provincial governments regarding SMA therapy outcome measures

A group of Canadian neuromuscular disease specialists who care for adults with SMA have written a letter to the provincial governments outlining their concerns and recommending an alternative timeline for outcome measurements in patients receiving the therapies. See our summary of the letter here.


NMD4C steering committee member awarded Tier 2 Clinical Research Chair

We are very proud to congratulate our steering committee member, Dr. Jodi Warman Chardon, for her new appointment at the University of Ottawa! Dr. Warman Chardon is now the Tier 2 Clinical Research Chair in Diagnosis and Discovery Pipeline for Patients with Genetic Neuromuscular Disease.

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A national spinal muscular atrophy registry for real world evidence

Recently, the Canadian Neuromuscular Disease Registry (CNDR) undertook an iterative multi-stakeholder process to expand its spinal muscular atrophy (SMA) dataset to capture items relevant to patient outcomes in the use of the new therapies such as nusinursen (Spinraza).


July 2020 newsletter

Topics include a new national biobank/biorepository virtual catalogue, NMD4C and Muscular Dystrophy Canada (MDC)’s webinar series, exciting new grants from Jesse’s Journey, MDC’s COVID-19 response, new research from NMD4C participants, and a member spotlight on steering committee member Dr. Jodi Warman Chardon.

Webinars-Genetics of Myopathies

Upcoming webinar: The genetics of congenital myopathies in French Canadians

NMD4C and MDC are pleased to invite you to a basic science webinar on July 7, 2020 about the genetics of congenital myopathies in French Canadians.


Exciting research grants awarded by Jesse’s Journey

One of NMD4C’s partners, Jesse’s Journey, recently announced their research grant recipients for 2020. NMD4C is very excited that two of our investigators were awarded funding!