NMD4C

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.

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.

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).

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.

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.

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!

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

1) New NMD4C monthly webinar series 2) Update on upcoming conferences 3) Two research participation opportunities 4) New research from NMD4C participants 5) Member spotlight on steering committee member Dr. James Dowling.

If you have a neuromuscular disorder or care for someone who does, we need your help! You are invited to participate in a questionnaire on the costs of living with a neuromuscular disorder and the impact of neuromuscular disorders on everyday life.

Read the report on our webinar “Current state of spinal muscular atrophy in Canada: Practical considerations for clinicians.” Updates on COVID-19, newborn screening, zolgensma, risdiplam, adult outcome measures, and the Canadian Neuromuscular Disease Registry SMA database.