The Neuromuscular Disease Network for Canada

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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. She was previously the Junior Clinical Research Chair in Novel Gene Discovery in Neuromuscular Disease. This appointment is an award and an acknowledgement by her peers as an exceptional emerging researcher with the potential to lead in her field. Dr. Warman Chardon’s clinical research focuses on improved genomic and imaging studies for patients with inherited myopathies and neuromuscular diseases.

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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.

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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).

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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.

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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.

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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!

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New research highlight: Ottawa

This week, NMD4C would like to highlight some of the fantastic recent neuromuscular work by our Ottawa colleagues.