May 2021 Newsletter

The May 2021 issue of the NMD4C newsletter is now available!

We give updates from our Biobanking working group including a list of Canadian neuromuscular biobanks, an introduction to the new clinical trial coordinator Bonnie Wooten, details about a Canadian Congenital Myotonic Dystrophy trial, a statement in response to high cost drugs for RD, and announce an event in partnership with Jesse's Journey & MDC! Also included are new research from NMD4C participants, and a member spotlight on NMD4C investigator Dr. Kathryn Selby.

View the May 2021 newsletter here.

Sign up for future issues of the NMD4C newsletter here.

vaccine, on bench

Letter of Support to Reduce the Timing Between COVID-19 Vaccine Doses for Patients With Neuromuscular Diseases

Introducing NMD4C Clinical Trial Concierge Bonnie Wooten

Defeat Duchenne Canadian Conference 2021: Addressing Duchenne muscular dystrophy (DMD) Standards of Care in Canada

Congenital Myotonic Dystrophy Trial Now Recruiting

Biobanking Working Group Update

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New Research from our Members

INPP5K and SIL1 associated pathologies with overlapping clinical phenotypes converge through dysregulation of PHGDH.

  • Denisa Hathazi, with Dr. Hanns Lochmüller (Lead Investigator) as a co-author.

Associations Between Variant Repeat Interruptions and Clinical Outcomes in Myotonic Dystrophy Type 1.

  • Stephan Wenninger, with Dr. Hanns Lochmüller (Lead Investigator) as a co-author.

E-Health & Innovation to Overcome Barriers in Neuromuscular Diseases. Report from the 1st eNMD Congress: Nice, France, March 22-23, 2019.

  • Jonathan Pini, with Dr. Hanns Lochmüller (Lead Investigator) as a co-author.

Autologous Hematopoietic Stem Cell Transplantation for Chronic Inflammatory Demyelinating Polyradiculoneuropathy.

  • Josée Masson-Roy, with Dr. Jodi Warman-Chardon (Investigator) as a co-author.

Accomplishment of instrumental activities of daily living and its relationship with cognitive functions in adults with myotonic dystrophy type 1 childhood phenotype: an exploratory study.

  • Marjolaine Tremblay, with Dr. Cynthia Gagnon (Investigator) as a co-author.

Responsiveness of daytime sleepiness and fatigue scales in myotonic dystrophy type 1.

  • Luc Laberge, with Dr. Cynthia Gagnon (Collaborator) as a co-author.

Assessment of muscular strength and functional capacity in the juvenile and adult myotonic dystrophy type 1 population: a 3-year follow-up study.

  • Marie-Pier Roussel, with Dr. Cynthia Gagnon (Investigator) as a co-author.

Nutritional Risk in Oculopharyngeal Muscular Dystrophy: Beyond Dysphagia.

  • Catherine Forgues, with Bernard Brais (Investigator) and Dr. Cynthia Gagnon (Collaborator) as co-authors.

The efficacy of neurosurgical intervention on sleep-disordered breathing in pediatric patients with Chiari malformation type I.

  • Giorge Voutsas, with Dr. Reshma Amin (Investigator) as a co-author.

A virtual care innovation for home mechanical ventilation.

  • Reshma Amin (Investigator).

Modification to Neurology Residency Training: The Toronto Neurology COVID-19 Pandemic Experience.

  • Ryan Muir, with Dr. Aaron Izenberg (Collaborator) as a co-author.