The Neuromuscular Disease Network for Canada

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NMD4C Year in Review

NMD4C 2020 Year in Review

The NMD4C is proud to be where we are today. It is no easy task to unite a diverse community of stakeholders under a clear and united vision; even more difficult is to do so with the unique challenges every single member of our community faced during 2020.

With the sudden onset of obstacles early in the year, we are grateful for the outstanding work and involvement from everyone who was a part of the network in 2020. Thanks to the resilience and drive of our Steering Committee, Investigators, Collaborators, and members, we are in the position to celebrate a year of success and meaningful gains towards our network goals.

We look forwards to growing as a network with all of you in the coming year, and in the meantime invite you to reflect on some of the highlights from the past year.

Wishing everyone a happy holiday, and we will see you in 2021!

 

Noteworthy News

Revisit the top 5 most-read news stories published by the NMD4C over the past year!

  1. COVID-19 and Neuromuscular Patients
  2. Current State of Spinal Muscular Atrophy (SMA) in Canada Webinar Report
  3. COVID-19 Resources Care Recommendations for Home Based Ventilation Patients
  4. Pulmonary support for people with myotonic dystrophy during COVID-19 pandemic
  5. Letter to provincial governments regarding SMA therapy outcome measures

 

Early Career Holiday Reading

The NMD4C is fortunate to have so many members who are in the early stages of their careers; we believe that providing training and support to these members will impact the knowledge and understanding of NMD for the next generation of clinicians and researchers.

Throughout 2020 we have featured several of our members through our early career blogs; find the full list of blogs here! From finding inspiration to offering new perspectives, the blogs provide insight into the challenges and triumphs of navigating a nascent career in science and medicine.

 

2020 Webinar Wrap Up

With our partner, Muscular Dystrophy Canada, we wrapped our incredible slate of webinars in 2020 with December’s Up and Coming Stars in NMD, where we heard from several young researchers and clinicians who are engaged in exciting projects in NMD.

We are planning to build on these successful webinars in 2021 and will resume January 5th, with All You Need to Know about CMT – Clinical Updates, and NMD Case Rounds and Genetic Neuropathies in the following months!

Check out reports of past webinars in 2020 from NMD4C and our partners:

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Read next...

JND treatabolome

Treatabolome Project Designed to Shorten Diagnosis-to-Treatment Time for Patients with Rare Diseases

The NMD4C would like to share the publication of a special issue of the Journal of Neuromuscular Disease dedicated to the Treatabolome, a new online database for rare disease and gene-specific treatment information. The special issue includes six systematic reviews contributed by experts on rare neurological disorders.

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Neuromuscular Research Funding Announcements From Jesse’s Journey and Muscular Dystrophy Canada

The NMD4C is excited to share recent grant funding announcements from two of our partners, Jesse’s Journey and Muscular Dystrophy Canada. Jesse’s Journey will grant $1.7M toward four promising research projects this year. Muscular Dystrophy Canada (MDC) will invest $400,000 towards seven new research projects through the MDC Neuromuscular Disorder (NMD) Research Grant Competition and through the European Joint Programme on Rare Diseases (EJP RD).

newborn screeningMay

Muscular Dystrophy Canada Announce Phase 2 of Newborn Screening Initiatives with Call for Funding Proposals

MDC is excited to launch Phase 2 of their work with a call for proposals for local newborn screening for SMA initiatives. It is anticipated that these projects will be led by labs or clinicians (or both) and should either focus on setting the lab up for testing or ensuring efficient uptake of policy (i.e., addition of SMA to existing provincial newborn screening panel).

EC Update

Early Career Working Group Update

the NDM4C has created a list of profiles for these members, where you can learn more about their research interests, publications, and where you can find them online. The NMD4C has also launched an early-career Slack channel, and are seeking early career member representation on our work packages.

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Read Dr. Louise Moyle’s Early Career Blog

Read the latest early career blog post, from NMD4C member Dr. Louise Moyle. 

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Jesse’s Journey Grants $1.7 Million to Duchenne Muscular Dystrophy Research

Jesse’s Journey, Canada’s leader in Duchenne muscular dystrophy funded research, will grant $1.7M toward four promising research projects this year.