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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Dr. Hanns Lochmüller Recipient of the Dr. George Karpati Award for Researcher of the Year

The NMD4C are excited to share that the network’s lead investigator Dr. Hanns Lochmüller is the recipient of Muscular Dystrophy Canada’s Dr. George Karpati Award for Researcher of the Year! This prestigious award is presented annually to an exemplary neuromuscular clinician or researcher who has made a significant contribution to neuromuscular research, or the advancement of care of people with neuromuscular disorders. 

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Final Session of the Defeat Duchenne Canadian Conference Wrap-Up and Thank You

Thank you to everyone able to join us for the 2021 Defeat Duchenne Conference Series addressing Duchenne Muscular Dystrophy Standards of Care in Canada. Jesse’s Journey in partnership with NMD4C and MDC are so appreciative of all our speakers and conference chairs who dedicated their time and energy in developing the programs. We successfully generated insightful conversations and discussions on how we might address care gaps in Canada. We are now working towards publishing the proceedings from this conference series to help shape the future of care for your patients and our families living with Duchenne in Canada.

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Share Your Events with the NMD4C

The NMD4C strives to provide opportunities for our members for continuing neuromuscular training, development of knowledge and skills, and collaborate with other neuromuscular stakeholders; If you or your organization are hosting a neuromuscular event, conference or webinar, we would like to help you share it with our neuromuscular members!

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2021 NMD4C Year in Review

The NMD4C wrapped up its 2nd Annual Investigator meeting on Monday, November 29th 2021. This virtual conference served as an opportunity for the network’s investigators to come together and discuss the progress made towards the network’s goals over the past 12 months, with the leaders of the seven working groups presenting the results of their work. With the calendar year wrapping up, it is the perfect opportunity to reflect on all the inspiring progress the NMD4C has made over the past year in pursuit of the network’s goals.

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Session Three of Defeat Duchenne Canadian Conference Addressing Standards of Care in Canada to Take Place December 3rd and 4th

The NMD4C is proud to partner with Jesse’s Journey and Muscular Dystrophy Canada (MDC) in hosting the first national summit solely focused on DMD for health care providers across Canada, with the theme for this year’s event being ‘Addressing DMD Standards of Care in Canada.’ Don’t forget to register for the third and final session of the CPD-accredited Defeat Duchenne Canadian Conference, which will take place on the 3rd and 4th of December, 2021.

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November 29th Networking Event for all NMD4C Members

The NMD4C are excited to extend an invitation to our members to join us at a Networking Event on November 29th at 2:10pm. This event is open to all NMD4C members and is an opportunity to meet and network with fellow colleagues, early-career clinicians and researchers, NMD4C investigators and working group members, and to discuss all things neuromuscular!