Category: Research

MDC funds nine new projects to propel research forward and break down barriers

Toronto, Ontario – Muscular Dystrophy Canada (MDC) is proud to announce an investment of $832,766 to fund nine new clinical and translational science research projects in 2023 through the MDC neuromuscular disorder (NMD) research grant competition, a dedicated Canadian source of funding for neuromuscular research.

“Muscular Dystrophy Canada is a leader in funding ground-breaking research for all neuromuscular disorders. This does two things: first, it lets us advance the global understanding of NMDs and the advancement of more treatments, therapies, and potential cures. And second, our involvement with these research projects means we can get people the most up-to-date information they need,” stated Stacey Lintern, CEO, Muscular Dystrophy Canada.

Drawing on the expertise of Canadian and international reviewers, including neurologists, researchers, allied health care professionals, and people with lived experience, the top projects were identified for funding.

“We held a rigorous peer-review process, and as a result, the projects selected for funding are diverse and potentially high-impact research. The projects cover different neuromuscular disorders and aspects of diagnosis, clinical care, and management and evaluate the impact on muscle function and systems outside of muscles, as well as quality of life,” said Dr. Homira Osman, Vice President, Research and Public Policy, Muscular Dystrophy Canada. She added, “supporting such projects not only contributes to the knowledge base, but it strengthens the Canadian neuromuscular research infrastructure and brings us one step closer to cures.”

The projects submitted this year for consideration were of remarkable quality, and we thank each and every team for their interest in doing this important work. MDC relies on the generosity of Fire Fighters, donors and volunteers to invest in life-changing research, and is honoured to fund the exceptional and bright researchers, clinicians and academics who will lead these nine new projects taking place in hospitals and universities across Canada.

Learn more “MDC funds nine new projects to propel research forward and break down barriers”

A Partnership to Fund Research for Hereditary Ataxias

FOR IMMEDIATE RELEASE

Montreal, February 28, 2023 – It is with great pleasure that Génome Québec, Ataxia Canada and Muscular Dystrophy Canada join forces in order to create a funding program for research on hereditary ataxias.

The goal of this program is to meet the needs of people affected by these rare neurological diseases, to allow them to benefit from genomic innovations and to encourage the development of innovative therapies. This program would support the objectives and orientations of the federal and provincial governments, notably by accelerating therapeutic innovation (Politique québécoise pour les maladies rares) and by presenting a concrete alternative for the creation of new drugs for the treatment of rare diseases (Building a National Strategy for Drugs for Rare Diseases: What We Heard from Canadians).

This partnership will not only mobilize the research community in the field, but also undertake a co-development approach in collaboration with foundations representing people affected by ataxia. This alliance will thus contribute to the democratization of research while increasing public awareness of ataxias.

This program will only be open to Québec researchers; more information will be available in the spring.

Learn more “A Partnership to Fund Research for Hereditary Ataxias”

MDC, CNDR, NMD4C partner to ensure Canadians can access FSHD cure(s)

FOR IMMEDIATE RELEASE February 28, 2023

Toronto, Ontario – Canadians affected by facioscapulohumeral muscular dystrophy (FSHD) could face substantial delays in accessing clinical trials and any Health Canada approved life-changing treatments and therapies when they become available. Muscular Dystrophy Canada (MDC), the Canadian Neuromuscular Disease Registry (CNDR), and the Neuromuscular Disease Network for Canada (NMD4C) are joining forces to help prevent that from happening.

“Studies show that Canadians have less frequent and timely access to therapies for rare diseases, like FSHD; that very few therapies approved elsewhere in the world are even submitted to Health Canada for regulatory approval; and, that if treatment is approved there is a vast difference in who has access, across the provinces,” said Stacey Lintern, CEO Muscular Dystrophy Canada.

Learn more “MDC, CNDR, NMD4C partner to ensure Canadians can access FSHD cure(s)”

First of its kind: New program will increase patient engagement in neuromuscular disorder research

Toronto, Ontario – Muscular Dystrophy Canada (MDC) and the Neuromuscular Disease Network for Canada (NMD4C) are proud to announce the launch of imPORTND, an online patient-oriented research (POR) training platform.

The imPORTND platform offers online, self-directed, free training modules on how to conduct research that is informed by, and most meaningful to individuals living with neuromuscular disorders. The modules are designed for all members of the study team: including researchers, lab staff, and patient- and family partners.

“Canadians affected by neuromuscular disorders and their families are increasingly asked to take an active role in research, but they often feel unprepared to participate,” said Dr. Homira Osman, Vice President, Research and Public Policy, Muscular Dystrophy Canada. “The training provided through imPORTND will ensure people have the confidence and knowledge needed to be involved in all stages of research: decision-making, design, planning, delivery, evaluation and knowledge mobilization. The modules will help ensure patient and family partners are well-equipped to share their lived expertise, guide discussions and inform decisions regarding health care, research, and therapy development with policymakers, industry and scientists.”

Focused on a ‘Nothing about me; without me’ patient-centred approach, imPORTND was co-developed with a team of expert patient partners, clinicians, researchers, and patient partner organization members, and is the first POR training developed specifically for neuromuscular disorder research.

“When patients and researchers collaborate on projects, the work they co-create is more meaningful and able to make real and positive impacts. Learning to work together is what ‘imPORTND’ is all about. The modules focus on the tools, skills and relationships needed by researchers, patient-partners and clinicians to partner for work that is more inclusive, equitable, diverse and accessible.,” said Dr. Kathryn Selby, Medical Director, Pediatric Neuromuscular Program of BC and the Yukon and Patient-Oriented Resources Lead Investigator at the Neuromuscular Disease Network for Canada.

The neuromuscular community is excited to participate in projects that impact them directly.

“As patient partners, our voices give deeper understanding to neuromuscular conditions, with each one of us sharing our unique lived experiences. Together with medical research teams, we prioritize meaningful timely research that immediately serves to improve quality of life,” said Linda Niksic, NMD4C Patient Research Partner, and contributor to the imPORTND training modules.

Additional information about imPORTND, can be found at importnd.neuromuscularnetwork.ca.

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ABOUT MUSCULAR DYSTROPHY CANADA

Muscular Dystrophy Canada’s mission is to enhance the lives of persons affected by neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for cures through well-funded research. To learn more about MDC, please visit muscle.ca or call our toll-free number at 1-800-567-2873.

MEDIA CONTACT

Heather Rice
Muscular Dystrophy Canada
Heather.Rice@muscle.ca
902-440-3714

$360,000 in fellowships awarded to advance neuromuscular research and healthcare

FOR IMMEDIATE RELEASE January 19, 2023

Muscular Dystrophy Canada (MDC) together with the Neuromuscular Disease Network for Canada (NMD4C) are excited to announce the recipients of a funding competition, which awarded national post-doctoral fellowships in neuromuscular research and clinical fellowships in neuromuscular medicine and electromyography.
This competition saw many incredible applicants and involved a thorough and extensive review by leading Canadian neuromuscular researchers and clinicians to ensure the most promising and top-ranked researchers, and leaders in neuromuscular care, received funding.

“This initiative helps train and educate the next generation of neuromuscular researchers and clinicians. The post-doctoral fellowships help strengthen neuromuscular research capacity, and the clinical fellowships will strengthen the specialist care available to the neuromuscular community,” said Stacey Lintern, CEO, Muscular Dystrophy Canada. “For our clients, that means we are investing in the sustainability of neuromuscular research, which brings us one step closer to finding cures, and in skilled clinicians that will provide clinical care to individuals affected by neuromuscular disorders and help raise standards of care.”

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International research competition results in funding for innovative Collagen 6- related dystrophy research projects

Muscular Dystrophy Canada (MDC) is pleased to announce two Collagen 6- related dystrophy (Col6-RD) research projects will be funded thanks to generous donors, and a partnership with Cure CMD (Congenital Muscular Dystrophy).

Collagen 6- related dystrophies (Col6-RD) are genetic types of muscular dystrophies that include Bethlem myopathy, Ullrich congenital muscular dystrophy and intermediate forms (Limb-girdle muscular dystrophy R22/D2). They are characterized by muscle weakness that can begin in infancy and can affect mobility, breathing, eating and activities of daily living.

Currently there is no cure for Col6-RD and knowledge on how the disorder develops is limited. Research is the essential next step towards therapy development.

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Muscular Dystrophy Canada Is Participating in Clinical Trials Quebec’s Pilot Project

Muscular Dystrophy Canada Is Participating in Clinical Trials Quebec’s Pilot Project

Muscular Dystrophy Canada (MDC) is proud to announce it has joined Clinical Trials Quebec’s Personalized Support Service pilot project.

The new program, developed by Clinical Trials Quebec and powered by CATALIS Quebec, is a free, bilingual resource designed to offer patients and caregivers in Quebec the possibility of finding clinical trials meeting their criteria. The service’s goal is to provide patients and their loved ones with accurate and verified information so they can initiate or facilitate discussions with their medical team about participating in a clinical trial.

Learn more “Muscular Dystrophy Canada Is Participating in Clinical Trials Quebec’s Pilot Project”

RESEARCH FUNDING IS CHANGING NEUROMUSCULAR LANDSCAPE IN CANADA

Because of generous supporters, like you, nine new clinical and translational science research projects received funding this year. These projects are excellent examples of the high quality, exciting research taking place right here in Canada! We wouldn’t be able to support research like this without YOU.

2021-2022
RECIPIENTS:

Building a screenable human 3D neuromuscular junction model for neuromuscular disorders
Dr. Thomas Durcan
The Royal Institution for the Advancement of Learning/McGill University

Mitochondrial-targeted therapies to improve Duchenne muscular dystrophy outcomes
Dr. Christopher Perry
York University

Genome-wide DNA methylation profile in Duchenne muscular dystrophy
Dr. Craig Campbell
London Health Sciences Centre
(Lawson Health Research Institute)

Measuring balance in chronic inflammatory demyelinating polyneuropathy
Dr. Michael Berger
University of British Columbia

Endurance training as a novel therapeutic strategy for myotonic dystrophy type 1
Dr. Bernard Jasmin
University of Ottawa

QP-OPMD: Quantitative MRI imaging to assess progression in oculopharyngeal muscular dystrophy
Dr. Jodi Warman Chardon
Ottawa Hospital Research Institute

Exploring the impact of spinal bulbar muscular atrophy on persons self-identifying as Indigenous
Dr. Kerri Schellenberg
The University of Saskatchewan

The transition of TEENagers with spinal muscular atrophy to a multi-disciplinary adult program
Dr. Reshma Amin
The Hospital for Sick Children

Motor network connectivity in spinal muscular atrophy: new pathways for intervention
Dr. Maryam Oskoui
The Research Institute of the McGill University Health Centre

Learn more “RESEARCH FUNDING IS CHANGING NEUROMUSCULAR LANDSCAPE IN CANADA”

Announcing Muscular Dystrophy Canada’s 2022 Research Grant Competition winners!

We are pleased to share that we are funding nine new clinical and translational science research projects focusing on spinal muscular atrophy, Duchenne and Becker muscular dystrophies, immune mediated neuropathies, congenital myasthenic syndromes, immune-mediated neuromuscular junction disorders, myotonic dystrophy, occulopharyngeal muscular dystrophy, spinal bulbar muscular atrophy (Kennedy disease), and other related neuromuscular disorders.

Thank you to our donors who helped make this possible and to our Research Grant Review Panels of researchers, clinicians and community members with lived experience who volunteered their time to carefully review and help narrow down applications to our final projects.

“Through these exciting projects, these talented and dedicated Canadian researchers will develop new methods for disease diagnosis, uncover novel insight into disease pathogenesis, and develop new treatments options, amongst other meritorious projects,” says Dr. Robin Parks, Chair of the Medical and Scientific Advisory Committee for Muscular Dystrophy Canada (MDC) and Chair of the Translational Science Review Panel. “Through their support of MDC, donors, patients and their families are helping fund outstanding research projects that will move neuromuscular research forward and ultimately improve care and quality of life for those affected by neuromuscular disorders – which aligns with MDC’s mission.”

“We are extremely pleased with breadth of proposals received to our call for clinical and translational science research proposals we received this year. This is a hopeful sign of the continued momentum and progress in neuromuscular research. The nine selected recipients show exemplary innovation, dedication and promise of potential impact for a wide range of neuromuscular disorders,” says Stacey Lintern, CEO of Muscular Dystrophy Canada. “Because of our incredible community, we are able to fill a critical gap in research funding. We know how much change is possible from Canadian researchers and we are continually working with our supporters to ensure we invest in meaningful ways.”

Thank you to the Canadian neuromuscular research community for putting forward impactful applications.

2022-2023 WINNERS:

  • Dr. Thomas Durcan, MD, The Royal Institution for the Advancement of Learning/McGill University
    Building a screenable human 3D neuromuscular junction model for neuromuscular disorders
  • Dr. Christopher Perry, MD, York University
    Mitochondrial-targeted therapies to improve Duchenne muscular dystrophy outcomes
  • Dr. Craig Campbell, MD, London Health Sciences Centre Research Inc. (Lawson Health Research Institute)
    Genome-wide DNA methylation profile in Duchenne Muscular Dystrophy
  • Dr. Michael Berger, MD, University of British Columbia
    Measuring balance in chronic inflammatory demyelinating polyneuropathy
  • Dr. Bernard Jasmin, MD, University of Ottawa
    Endurance training as a novel therapeutic strategy for Myotonic Dystrophy type 1
  • Dr. Jodi Warman-Chardon, MD, Ottawa Hospital Research Institute
    QP-OPMD: Quantitative MRI Imaging to Assess Progression in Oculopharyngeal Muscular Dystrophy
  • Dr. Kerri Schellenberg, MD, The University of Saskatchewan
    Exploring the impact of Spinal Bulbar Muscular Atrophy on persons self-identifying as Indigenous
  • Dr. Reshma Amin, MD, The Hospital for Sick Children Dr. Aaron Izenberg, MD, Sunnybrook Health Sciences Centre
    The Transition of TEENagers with Spinal Muscular Atrophy to a Multi-Disciplinary Adult Program
  • Dr. Maryam Oskoui, MD, The Research Institute of the McGill University Health Centre
    Motor network connectivity in spinal muscular atrophy: new pathways for intervention

WATCH THE ANNOUNCEMENT