The Neuromuscular Disease Network for Canada

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

The NMD4C are excited to share an update from MDC around their ongoing work in newborn screening (NBS) for spinal muscular atrophy (SMA).

 

NBS gives families the opportunity to make important healthcare decisions from the very beginning and gives every child a chance to realize their developmental potential. After launching phase 1 in December which involved a readiness and feasibility assessment of standardized SMA screening programs in Canada, 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).

 

The deadline to submit proposals is June 16th, 2021 @ 11:59pm ET.

 

Click here to read the full press release and find out more about MDC’s newborn screening initiatives and the call for proposals! If you have any questions, please email  

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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).

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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.

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Introducing NMD4C Clinical Trial Concierge Bonnie Wooten

To facilitate the network’s Clinical Trial Coordination activities and to meet this demand, the NMD4C is excited to announce the hiring of Bonnie Wooten, who has joined the team in her role as the Clinical Trial Concierge. In her role, Bonnie will work with all stakeholders including clinicians, families, and industry.