February 2022 Newsletter

The February 2022 issue of the NMD4C newsletter is now available! Read about the new patient oriented research resources tool from the EPCB group, A uniquely Canadian clinical trial funded in part by Jesse's Journey, an exciting collaboration between MDC and IL Canada to help inform the development of Canada's first disability inclusion action plan! Plus job opportunities, events, new research, member spotlights and more!

View the February 2022 newsletter here.

Sign up for future issues of the NMD4C newsletter here.

The three recipients of NMD4C, MDC and CSCN's fellowship funding competition

Recipients of Clinical Fellowship Funding Competition from NMD4C, MDC and CSCN Announced

MDC and IL Canada Partner to Help Inform Development of Canada’s First Disability Inclusion Action Plan

EPCB Working Group Launches Patient Oriented Research Resources Tool

Defeat Duchenne Canada Funds Uniquely Canadian Clinical Trial

New Research from NMD4C Participants

Outpatient Respiratory Management of Infants, Children, and Adolescents with Post-Prematurity Respiratory Disease: An Official American Thoracic Society Clinical Practice Guideline

  • Dr. Ioana Cristea with Dr. Reshma Amin (investigator) as a co-author.

 

Safety and efficacy of once-daily risdiplam in type 2 and non-ambulant type 3 spinal muscular atrophy (SUNFISH part 2): a phase 3, double-blind, randomised, placebo-controlled trial

  • Dr. Eugenio Mercuri with Dr. Maryam Oskoui (investigator) as a co-author.

 

Collagen VI regulates motor circuit plasticity and motor performance by cannabinoid modulation

 

Congenital myasthenic syndrome in a cohort of patients with 'double' seronegative myasthenia gravis

  • Dr. Paulo José Lorenzoni with Dr. Hanns Lochmüller (lead investigator) as a co-author.

 

Development of a standard of care for patients with valosin-containing protein associated multisystem proteinopathy

  • Dr. Manisha Korb with Dr. Gerald Pfeffer (working group member) as a co-author.

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