NMD4C: The Neuromuscular Disease Network for Canada

As we enter the new year, we’re taking a moment to reflect on the incredible work accomplished in 2025 and the meaningful progress our network has made toward our shared goals. Thank you to our steering committee, team leads, investigators, patient partners, collaborators and our partner organization MDC!

See our 2025 highlights!

Network Updates

As of December 2025, NMD4C has reached an exciting milestone of 895 members.

In July, we welcomed Lola Owoeye, MA, as our new Communications and Administrative Coordinator. We also launched our annual 2026 Awards Competition to recognize outstanding achievements across the neuromuscular research community.

NMD4C hosted its 2025 Annual Meeting in Ottawa

In September, we brought together investigators and members for our annual NMD4C Meeting in Ottawa for a full day of collaborative sessions, strategic discussions, and networking among clinicians, researchers, trainees, and partners from across Canada. A key highlight was a recognizing our recent Early Career awardees and NM fellowship funding recipients.

This year also saw important updates to our website, including:

1. Resource & Training Hubs to make it easier for all our members to find our e-learning tools, and research resources.
2. The Basic Science Trainee Committee (BSTC) developed a comprehensive set of Standard Operating Procedures (SOPs) tailored to the neuromuscular field.

Network Pulications Advancing Neuromuscular Research

Our network continues to grow, collaborate, and push the field forward, and these 2025 publications highlight the impact our community is making together:

1) Building Capacity for Patient Engagement in Neuromuscular Disease Research: This open‑access publication introduces imPORTND, the first patient‑oriented research (POR) training program tailored specifically to neuromuscular diseases. Co‑developed by NMD4C patient‑partners, investigators, clinicians, and researchers, the program addresses long‑standing gaps in POR training and supports meaningful, accessible engagement across the neuromuscular research community.
Authored by Patricia Mortenson, Homira Osman, Erin Beattie, Corinne Kagan, Victoria Larocca, Claudia Maltais, Linda Niksic, Margo Thompson, and Kathryn Selby, the paper outlines the work of our Expert Patient Capacity Working Group, who developed a comprehensive table of patient‑oriented research resources to identify existing gaps and guide the creation of the imPORTND modules. This publication highlights the collaborative process behind building the program and the importance of strengthening patient‑partner capacity in neuromuscular research.

We would like to thank all authors and patient‑partners involved in developing the imPORTND training modules for their incredible work and for making this paper possible.

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2) 2nd NMD4C Basic Research Summer School Report: A look back at our successful 2025 Summer School at York University in Toronto, reported by NMD4C investigators and members — including BSTC committee members Jean‑Philippe Leduc‑Gaudet, Adrien Rihoux, Emma Sutton, and Jaryeon Lee; research trainees Luke Flewwelling and Madison Garibotti; and investigators Homira Osman, Arthur Cheng, Anthony Scimè, Christopher Perry, Kessen Patten, Natasha Chang, and Rashmi Kothary — where trainees and researchers came together to promote standardized protocols, elevate methodological rigor, and strengthen translational research across the Canadian neuromuscular community.

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3) Assessing the socio-economic burden of inherited and inflammatory neuromuscular diseases (BIND study): A recently published protocol paper led by NMD4C investigators and members Homira Osman, Stacey Lintern, Ian Smith, Alyssa Grant, Lola Lessard, Hanns Lochmüller, Hugh McMillan, Kathryn Selby, Gerald Pfeffer, Lawrence Korngut, Cynthia Gagnon, Kednapa Thavorn, and Jodi Warman-Chardon, together with Zainab Adamji (NMD4C OMNH and Curriculum & Education Coordinator), outlined how the BIND study aimed to measure the full socio‑economic burden of inherited and inflammatory neuromuscular diseases across Canada. The team described plans to capture direct, indirect, and hidden costs experienced by individuals and families, laying the groundwork for evidence that could better inform policy and support programs.

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4) New BIND Study Highlights Financial Burden of Neuromuscular Disorders:

New BIND Study Highlights Financial Burden of Neuromuscular Diseases (BIND) study “Financial Toxicity and Its Determinants in Individuals Living With Neuromuscular Diseases,” has been published in Neurology (2025). This is the first of its kind in Canada to document the true costs of living with neuromuscular diseases led by  Dr. Jodi Warman-Chardon, and was made possible through the contributions of Dr. Alyssa Grant, our members Dr. Ian Smith and Dr. Lola Lessard, and our investigators Dr. Homira Osman, Dr. Hanns Lochmüller, Dr. Hugh McMillan, Dr. Gerald Pfeffer, Dr. Lawrence Korngut, Dr. Cynthia Gagnon, Stacey Lintern, Dr. Kathryn Selby and Dr. Kednapa Thavorn.

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5) New Best Practice Recommendations for SBMA Care in Canada: 

The very first Canadian “Best practice recommendations for the clinical care of spinal bulbar muscular atrophy” was published in the Canadian Medical Association Journal (CMAJ) by Dr. Kerri Schellenberg, a team of Canadian experts, NMD4C Steering Committee members and Investigators!

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Pre-Clinical Research

The animal and cell-based research team welcomed Dr Pamela Khacho, as NMD4C’s Pre-Clinical Science Coordinator. We hosted the second annual Basic Research Summer School, led by Dr. Christopher Perry at York University on May 7–8, 2025. This national training event brought together 30 graduate students and postdoctoral fellows from across Canada for an intensive two-day program dedicated to advancing neuromuscular research skills and connections.

Together with MDC, we awarded four Collaborative Research Trainees with financial support to visit laboratories within Canada to gain hands-on experience, learn new techniques, and further develop their expertise in neuromuscular disease-focused research.

Clinical Research

On September 10–11, 2025, we hosted our inaugural Clinical Summer School to empower 18 of Canada’s future neuromuscular leaders. The immersive two-day program featured interactive, hands-on workshops led by Canadian experts, including Drs. Alberto Aleman, Grayson Beecher, Ari Breiner, Leslie Hamilton, Hanns Lochmüller, Hugh McMillan, Gerd Melkus, Kiran Polavarapu, Zaeem Siddiqi, and Jodi Warman Chardon. These sessions were designed to complement NMD4C’s Royal College–accredited National Neuromuscular Lecture Series, offering fellows a unique opportunity to refine diagnostic and analytical skills in a collaborative setting. A highlight of the event was the peer election of Dr. Joaquín Machado and Dr. Bridget Mulvany-Robbins as Co-Chief Neuromuscular Fellows. We also extend our thanks to Dr. Zahra Aleisa for her outstanding service and leadership as our 2024/2025 Chief Neuromuscular Fellows. Her commitment has been instrumental in shaping a supportive and enriching environment for fellows across the network.

Expanding National Clinical Outcome Assessment Capacity with Train(e)d

To strengthen diagnosis, track disease progression, and support treatment evaluation, NMD4C’s Outcome Measures and Natural History (OMNH) group is developing a national framework for outcome‑measure development, natural‑history infrastructure, patient‑reported outcomes, and diagnostic imaging capacity. This work will enhance clinical trials, real‑world evidence generation, and care for people living with neuromuscular disorders.

Building on the success of earlier workshops, NMD4C and Muscular Dystrophy Canada created  Train(e)d – Training Resource for Assessments in Neuromuscular Disorders, a national e‑learning platform offering scalable, on‑demand training for clinicians and researchers. As of today, outcome‑measure training modules for Spinal Muscular Atrophy (SMA) and Friedreich Ataxia (FA) are available, with additional modules in development as part of our commitment to expanding neuromuscular disease training across Canada.

Clinical Research Practice

We are thrilled to share that Réseau Québécoise de l’Amyotrophie Spinale (RQAS)—a network uniting rehabilitation clinicians across Quebec to advance care for people with Spinal Muscular Atrophy (SMA) since 2022—has officially joined the NMD4C as a sub‑group Community of Practice (CoP). Our CoP’s for physiatry, PT/OT, and clinical trial research staff also have a new home on our website, making it easier to access the latest updates and upcoming events across all neuromuscular CoPs.

In September 2025, we announced our 2026 Neuromuscular Clinical Fellows. Through our Neuromuscular Fellowship Funding Award, we continue to support trainees across Canada by strengthening clinical training in neuromuscular medicine and preparing the next generation of specialists who will advance neuromuscular care nationwide.

If you have any questions about any of our work, please contact our Network Manager, Erin Beattie.