The Neuromuscular Disease Network for Canada

funder-logos_nmd4c

July 2020 newsletter

The July 2020 issue of the NMD4C newsletter is now available!

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.

View the July 2020 newsletter here.

Sign up for future issues of the NMD4C newsletter here.

email-3249062_1280

Read next...

writing-1149962_1920

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.

jodi-warman

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.

Annotation 2020-07-03 092543

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).

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.

money-4105043_1920

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!

canada-1343649_1920

New research highlight: Ottawa

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