The Neuromuscular Disease Network for Canada

funder-logos_nmd4c

Current state of spinal muscular atrophy (SMA) in Canada – 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)

Annotation 2020-05-20 103803

Read next...

email-3249062_1280

June 2020 newsletter

The June 2020 issue of the NMD4C newsletter is now available! Topics include the new NMD4C monthly webinar series, an update on the upcoming Muscular Dystrophy Canada (MDC) and World Muscle Society (WMS) conferences, two research participation opportunities, new research from NMD4C participants, and a member spotlight on steering committee member Dr. James Dowling. View the…

MDC BOI Study Poster_EN

MDC’s burden of illness study

La française suit   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. This is a research project being conducted by Muscular Dystrophy…

email-3249062_1280

May 2020 newsletter

We were excited to release the first issue of the NMD4C newsletter today! Topics include information about the Canadian Neuromuscular Disease Registry (CNDR), announcements for two upcoming survey studies for people with neuromuscular diseases and their caregivers, and a member spotlight on our principal investigator Dr. Hanns Lochmüller. View the May 2020 newsletter here. Sign…

Q&A

Ask the experts – COVID-19 and NMD

Many people with neuromuscular disease have questions about COVID-19. Muscular Dystrophy Canada (MDC) invites you to send your questions to , where they will be answered by neuromuscular specialists, respirologists, and researchers from across Canada. You can find the current compilation of questions and answers on this regularly updated FAQ page. Please note that these…

virus

COVID-19 care recommendations for people using home-based ventilation

Le français suit   As COVID-19 continues to affect our daily lives, it is critical that we try to limit the spread of the virus as much as possible. This is especially applicable for patients who use non-invasive positive-pressure ventilation (NIPPV), mechanical airway clearance devices, or are supported by home ventilation for other chronic respiratory…

lungs

Pulmonary support for people with myotonic dystrophy during COVID-19 pandemic

Le français suit   New COVID-19-related guidance has been produced for people living with myotonic dystrophy who already use some respiratory support at home or who need it if they get sick. These devices are very important to keep you breathing well, but extra care needs to be taken to make sure they are kept…