Press Releases – Muscular Dystrophy Canada

Moving Research & Discovery Forward – The 2024 Neuromuscular Clinical and Translational Research Grant Recipients

Muscular Dystrophy Canada (MDC) is pleased to announce the recipients of its annual Neuromuscular Research Grants competition. Through these grants, MDC is investing $900,000 into clinical and translational research projects focused on managing healthcare, understanding diagnosis and disease progression, enhancing care, discovering novel treatments and therapies and moving research towards the development of cures.

This year, the funded studies focus on spinal muscular atrophy, Duchenne muscular dystrophy, myotonic dystrophy, dysferlinopathies, limb-girdle muscular dystrophies, immune-mediated myopathies, autosomal recessive spastic ataxia of Charlevoix-Saguenay (ARSACS) and cross-cutting research with findings that will inform a wide range of neuromuscular disorders. Additionally, thanks to the generosity of our supporters, MDC was able to invest $63,630 towards an innovative natural history study led by Dr. Gonorazky on Charcot-Marie-Tooth disease, bringing our investment in research projects close to $1 million.

“These grants fund research across a broad set of neuromuscular disorders, help fill current gaps in the funding landscape, and honour our commitment to increasing opportunities for translational research,” said Stacey Lintern, CEO, Muscular Dystrophy Canada. “Of course, this is only possible thanks to our generous donors, incredible supporters, Fire Fighters and volunteers. I’d also like to thank the clinicians and researchers on our Scientific Review Panel, as well our Lived Experience Readers who volunteered their time and expertise in selecting this year’s recipients.”

2024-2025 clinical and translational science research grant recipients:

Dr Haim Abenhaim
Maternal and neonatal outcomes of cesarean deliveries in women with muscular dystrophy

Dr Krista Best
Efficacy of wheelchair skills training to improve mobility for people with ARSACS and DM1

Dr Nathalie Bier
Understanding the impact of central nervous system impairments on daily life in myotonic dystrophy

Dr Rageen Rajendram
Utilizing AI to predict non-invasive ventilation need in neuromuscular disorders: a proof of concept

Dr Karine Choquet
Elucidating DYSF pre-mRNA splicing to inform therapeutic avenues for dysferlinopathies

Dr Lisa Hoffman
Angiopoietin-1 enhances microdystrophin replacement therapy for Duchenne muscular dystrophy

Dr Rashmi Kothary
Maternal transfer of AAV vectors: a minimally invasive approach to deliver SMN-gene therapy for SMA

Dr Keir Menzies
A new in vitro eccentric muscle contraction assay for drug repurposing for muscular dystrophy

Dr Gerald Pfeffer
Single nucleus RNAseq biomarkers in adult-onset muscle diseases

Learn more about MDC’s research investments and the incredible projects that will improve our understanding and drive the development of new treatments and cures for NMDs:

Watch the full Neuromuscular Research
Grants announcement

Current Grants

Looking to connect with MDC’s Research Team? No problem! Contact our Research Hotline at research@muscle.ca

Neuromuscular Disease Network for Canada Awarded 5-Year Grant from CIHR-IMHA and Funding from MDC to Strengthen Canadian Neuromuscular Research and Care

For Immediate Release: June 21, 2023

Toronto, ON – The Neuromuscular Disease Network for Canada (NMD4C) has received a network grant from the Canadian Institutes of Health Research – Institute of Musculoskeletal Health and Arthritis (CIHR-IMHA), providing funding of $200 000 per year for five years – with matched funding from Muscular Dystrophy Canada (MDC) – to strengthen the care, research and treatment of neuromuscular diseases (NMDs) for all Canadians. The new grant brings together an expanded group of clinicians, scientists and patient representatives under the leadership of Dr Hanns Lochmüller (Children’s Hospital of Eastern Ontario) and Dr Homira Osman (MDC).

“Since 2020, NMD4C has made remarkable progress in uniting Canada’s neuromuscular community. In these rare diseases, it’s crucial that we work together. We’re delighted that we have grown to more than 500 members spanning multiple disciplines, sectors, and areas of expertise. The network has made tremendous strides in building capacity through training and education, providing leadership and advocacy to improve access to approved novel treatments, and strengthening research resources and infrastructure,” explains Dr. Hanns Lochmüller, Senior Scientist, CHEO Research Institute and Professor of Neurology, University of Ottawa. “But there’s still so much more to be done. New scientific challenges and opportunities mean that networking across Canada and the globe is even more important. This new funding will allow us to expand our supportive, collaborative, networked community of neuromuscular stakeholders, bringing together an unparalleled concentration of NMD expertise to provide a Canada-wide platform for communication, collaboration, and best-practice sharing. We’re very grateful to CIHR-IMHA and MDC for the funding that allows us to continue our work. We have some really exciting plans for this next phase of the network, particularly for our young doctors and researchers, and we can’t wait to get started.”

Building on the NMD4C’s successful work over the past three years, this new grant will enable an ambitious new program of research, networking, and clinical transformation to address emerging challenges in the field of NMDs. With a total of 67 named co-investigators from across the country bringing in their wider teams of researchers, this is one of the largest networking projects in the rare disease field in Canada. Matching funds are being provided by Canada’s leading NMD advocacy organization and partner on the grant MDC, for a combined total amount of $400 000 per year of network funding.

“We greatly value our longstanding partnership with the CIHR, and are deeply thankful to our many partners, Fire Fighters, donors, volunteers and supporters who generously give so that we can fund the vital work of NMD4C,” said Dr Homira, Osman, Vice-President, Research and Public Policy, Muscular Dystrophy Canada. “In addition to offering matched funding, our role in the new grant will be to ensure evidence is translated into practices and policies that will make a tangible difference in the lives of Canadians affected by neuromuscular disorders. Aligned with our recently unveiled Breaking Down Barriers five-year strategic direction, we will partner closely with researchers, clinicians, and the neuromuscular community to enhance proactive and collaborative approaches focused on strengthening infrastructure, enhancing capacity, establishing centers of excellence, and facilitating the dissemination of research outcomes.”

This new grant unites people with lived experience, knowledge users, clinicians, and researchers to execute a new research plan with the following objectives:

Learn more “Neuromuscular Disease Network for Canada Awarded 5-Year Grant from CIHR-IMHA and Funding from MDC to Strengthen Canadian Neuromuscular Research and Care”

Abilities (at the) Centre of new location for Walk and Roll for Muscular Dystrophy Canada

FOR IMMEDIATE RELEASE June 16, 2023

Toronto, Ontario – The 2023 Walk and Roll for Muscular Dystrophy Canada (MDC) has changed venues from a local park to the Abilities Centre in Whitby in an effort to ensure the event is as accessible as possible for all participants. It takes place on June 25, 2023.

“MDC is committed to breaking down barriers for the neuromuscular community. When we determined that the park location originally selected to host the Durham Walk and Roll for Muscular Dystrophy Canada posed accessibility issues for individuals using mobility devices, we set out to find a new site,” said Stacey Lintern, CEO, Muscular Dystrophy Canada. “We couldn’t be happier to be partnering with the Abilities Centre. It is the perfect space for the Walk and Roll event, and our community.”

Walk and Roll for Muscular Dystrophy Canada is MDC’s signature fundraising event, raising funds to provide Canadians affected by neuromuscular disorders support programs and services, invest in ground-breaking research and advocate for better public policies. Thirty-three events are taking place across Canada with an overall goal of raising $1.3 million.

The Abilities Centre strives to make communities more accessible and inclusive to increase the quality of life for every individual and enable them to participate fully in community life. They offer a wide range of programs and services, and lead research and advocacy on inclusion issues.

“Events like the Durham Walk and Roll for Muscular Dystrophy Canada are so important to bring attention to, and raise funds for, the organizations that are working tirelessly to make the communities where we live, work, and play more accessible and inclusive,” said Ross Ste-Croix, General Manager & COO of Abilities Centre.

Previously known as the Walk for Muscular Dystrophy, the nationwide fundraising event also underwent a name change this year to be more inclusive and reflective of the neuromuscular community. Anyone interested in participating in the Durham Walk and Roll for Muscular Dystrophy Canada can register at walkrollmdc.ca

The Durham Walk and Roll for MDC fundraising goal for 2023 is $53,000. Support your community by making a donation here.

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ABOUT MUSCULAR DYSTROPHY CANADA

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

ABOUT ABILITIES CENTRE

Abilities Centre exists to unlock potential through accessibility. Whether through vocational services, therapeutic recreation, adult day programs, or sport and recreation, every program and service at Abilities Centre is aimed at re-imaging how Canadians live, work and play. We continue to focus our impact to build towards an inclusive, barrier-free life for all Canadians. For more information abilitiescentre.org

FOR MORE INFORMATION CONTACT:

Heather Rice
Heather.Rice@muscle.ca
902-440-3714

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.

Learn more “International research competition results in funding for innovative Collagen 6- related dystrophy research projects”

Muscular Dystrophy Canada and Independent Living Canada partner to help lead the development of Canada’s first ever Disability Inclusion Action Plan

FOR IMMEDIATE RELEASE

Toronto, ON – January 27, 2021 – Muscular Dystrophy Canada (MDC) and Independent Living Canada (IL Canada) are partnering to equitably consult with individuals, organizations and stakeholders across disabilities to help inform the development of Canada’s first Disability Inclusion Action Plan (DIAP).

Beginning in January 2022, this 15-month collaboration will both inform the development of the DIAP in advance of its release, and continue to assess and improve the Plan throughout its implementation. The DIAP will focus on reducing poverty among persons with disabilities, getting more persons with disabilities employment opportunities, and realizing the goal of the Accessible Canada Act to achieve a barrier-free Canada by 2040, making it easier for persons with disabilities to access federal programs and services and fostering a culture of inclusion. Our goal is to ensure all Canadians have the opportunity to provide feedback, express concerns, and share their experiences to make this vital action plan as inclusive and impactful as possible.

With over 100 disability organizations invited to collaborate on this engagement process, IL Canada and MDC were selected to co-lead this project with support and funding from Employment and Social Development Canada (ESDC).

“For The Disability Action Plan to make a real impact in the lives of persons with disabilities, it has to be informed by lived experience. I’m grateful that Muscular Dystrophy Canada and Independent Living Canada will be working with the disability community to determine what barriers are still preventing persons with disabilities from participating in society, and how Canada can remove them to create a more equal, inclusive, and prosperous country” says The Honourable Carla Qualtrough, Minister of Employment, Workforce Development and Disability Inclusion.

IL Canada and MDC look forward to leading this process while ensuring representation from within all areas of disability, including racialized and LGBTQ2S+ communities.

“Independent Living Canada is thrilled to be leading this consultation process in partnership with Muscular Dystrophy Canada, the pillar leads, and individuals affected by disabilities from coast-to-coast to coast. This is a once-in-a-lifetime opportunity to ensure that the voices of marginalized and hard-to-reach people affected by disabilities are provided the opportunity to have their voices heard about what should be included in the first-ever federal Disability Inclusion Action Plan,” says Anne MacRae, National Executive Director, Independent Living Canada.

“Muscular Dystrophy Canada is honoured to work in partnership with IL Canada to consult Canadians affected by disabilities and share these experiences in a method that will drive the implementation of the much needed Disability Inclusion Action Plan,” says Stacey Lintern, CEO, Muscular Dystrophy Canada. “This is a vital action plan which will impact each and every Canadian in some way. We look forward to expanding our person-centred approach and ensuring all voices are heard throughout this process.”

MDC and IL Canada look forward to working with Inclusion Canada, Canadian Council on Rehabilitation and Work, Canadian Association of the Deaf, and Eviance who have been designated as leads for the four respective thematic pillars of the DIAP: Financial Security, Employment, Accessible and Inclusive Communities and a Modern Approach to Disability.

“At Inclusion Canada we are extremely excited about hearing from persons with a disability, their representative organizations and stakeholders across the country as the lead on the financial security pillar of the Disability Inclusion Action Plan,” says Krista Carr, Executive Vice-President, Inclusion Canada. “Hundreds of thousands of people with disabilities in Canada live in poverty and this urgently needs to change. We are looking forward to getting started right away.”

“We are pleased and excited at the funding support for this project. We really look forward to working with our partner organizations in building new bridges to hard-to-reach components of the Deaf, Deaf-blind and disabled communities across Canada,” says Jim Roots, Executive Director, Canadian Association of the Deaf.

“The Canadian Council on Rehabilitation and Work (CCRW) recognizes the capability of persons with disabilities, and supports their choices for equitable and meaningful participation in work. We are proud to be a pillar of change and build up the community by sharing our values, knowledge and commitment to Disability Inclusion and ensuring that there is an equitable approach to disability inclusive design,” says Maureen Haan, President and CEO, CCRW. “We are honoured to be involved in the development of the DIAP as the lead agency of the Employment Pillar. We are excited and motived to ensure this project will bring change and a voice to those with lived experience that remain hard-to-reach and marginalized populations with disabilities.”

“Eviance looks forward to collaborating on this important piece of work, and bringing together the knowledge and diverse experiences of persons with disabilities, to strengthen the federal Disability Inclusion Action Plan,” says Dr. Susan L. Hardie, PhD, Executive Director, Eviance.

About Muscular Dystrophy Canada

About Independent Living (IL) Canada

Founded in 1986, Independent Living Canada is a national non-profit association of Independent Living Centres led by and for people with disabilities who promote the Independent Living Philosophy. IL Canada supports the development of Independent Living Centres, and provides education and leadership for its member organizations, partners and communities.

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Media Contact

Heather Rice
Director, Marketing and Communications
Muscular Dystrophy Canada
heather.rice@muscle.ca
902-440-3714

Muscular Dystrophy Canada joins forces internationally to impact greater change at home

October 22, 2021 – Muscular Dystrophy Canada has signed a Statement of Intent with Muscular Dystrophy UK, Muscular Dystrophy Australia and Muscular Dystrophy Foundation of South Africa to help break down barriers for individuals living with neuromuscular disorders, worldwide.

“Our organizations share similar missions and values, and face similar challenges and hurdles. By coming together, we hope to share insights, policies and training to have a greater impact on the neuromuscular communities we support,” said Stacey Lintern, CEO, Muscular Dystrophy Canada.

The organizations recognize the need to work more actively on equality, diversity, inclusion and accessibility issues, and hope that more organizations will join them in the future.

“By working together on these issues, and sharing learnings with our partners, MDC will be able to more effectively and efficiently create sustainable change here in Canada, and play a role internationally,” added Lintern. “It has been an incredible experience working with these organizations thus far, and I have no doubt that our combined expertise and knowledge will result in positive changes for neuromuscular communities in the near future.”

ABOUT MUSCULAR DYSTROPHY CANADA

FOR MORE INFORMATION CONTACT:

Heather Rice
heather.rice@muscle.ca
902-440-3714

Researchers from across Canada join The Tenaquip Foundation’s Walk4MD to raise awareness and funding for neuromuscular disorder community

FOR IMMEDIATE RELEASE April 15, 2021

Toronto, Ontario – For the second year in a row, Muscular Dystrophy Canada (MDC) is bringing the neuromuscular disorder (NMD) community together virtually for its annual Walk4MD, which raises much needed funds to support Canadians affected – and this year researchers are joining the Walk4MD family.

On June 19 at 3 p.m. EST, thousands of Canadians including six prominent NMD researchers across the country will come together, virtually, to participate in The Tenaquip Foundation’s Walk for Muscular Dystrophy (Walk4MD).

Dr. Reshma Amin from the Hospital for Sick Children in Toronto is excited to be one of the Walk4MD Research Champions. “I look after so many amazing children with neuromuscular disease and their families. They deserve to be celebrated and what better way to do so than in partnership with MDC through the Walk4MD.”

“Important advancements are taking place in research right now, and we want to ensure that these advancements continue, and result in better treatments and ultimately a cure for neuromuscular disorders. We feel very fortunate to have the support of Dr. Reshma Amin, MD; Dr. Bernard Brais, MD, PhD; Dr. Nicolas Chrestian, MD; Dr. Robin Parks PhD; Dr. Gerald Pfeffer, MD, PhD; and Dr. Martine Tetreault, PhD and look forward to our NMD community getting to know these incredible individuals better,” said Stacey Lintern, CEO, Muscular Dystrophy Canada.

She added, “I’m also pleased to share that The Tenaquip Foundation is joining us again as title sponsor, and Global has returned as media sponsor for the second year in a row. Like us, they are committed to raising awareness and funds for the Canadian NMD community.”

The Tenaquip Foundation’s Walk4MD is a signature fundraising event for MDC that raises critical funds to support Canadians impacted by neuromuscular disorders. This year, due to the ongoing COVID-19 pandemic, the funds raised are more important than ever.

“There is still urgency to raise funds to meet the increased needs of our clients during this time,” says Lintern. “Like last year, we’ve had to cancel the majority of our fundraising events for the safety and well-being of our team and the NMD community. That unfortunately, has resulted in a 60 per cent decrease in revenue in our first quarter last year.”

The goal of The Tenaquip Foundation’s Walk4MD this year is to raise $870,000. These funds will be invested in services and programs, like equipment, and ensure MDC can meet the unique needs of the neuromuscular community while continuing to invest in research for better health outcomes for individuals impacted by neuromuscular disorders.

To learn more about The Tenaquip Foundation’s Walk4MD or to register for this exciting event, please visit walk4MD.ca

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ABOUT MUSCULAR DYSTROPHY CANADA

Muscular Dystrophy Canada’s mission is to enhance the lives of those impacted with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research. To learn more about Muscular Dystrophy Canada, 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

Fire Fighters Fill the Boot Campaign Goes Virtual

For Immediate Release. May 5, 2020

Toronto, Ontario – For an incredible 65 years Fire Fighters across Canada have helped Fill the Boot. Unfortunately, due to COVID-19, Fire Fighters had to cancel their fundraising efforts this Spring, but the needs of people impacted by neuromuscular disorders can’t be cancelled. MDC still needs to provide critical services and programs to our clients.

Fire Fighters and MDC want to keep the tradition of helping to Fill the Boot going and since Fire Fighters can’t physically be out in their communities asking people to help, we have created a virtual Fill the Boot campaign.

With the help of many supporters, including Owen McGonigal who kicked off the campaign with the first #filltheboot video, we are able to keep Fill the Boot efforts going this year.

“I look forward to seeing our local Fire Fighters out in the community every year. They are an incredible support and inspiration to the neuromuscular community,” says Owen. “I challenge all of you to join me and post your own video, make a donation and challenge your friends. Together, we can support Fire Fighters and all Canadians impacted by neuromuscular disorders.”

Supporters can post their #filltheboot video on social media, donate at filltheboot.ca and challenge three friends to do the same! Visit us on Facebook, Instagram and Twitter to see the #filltheboot campaign in action!

“We’re so excited about this campaign and the opportunity to move our fundraising efforts to the virtual world. During such an unprecedented and uncertain time, one thing we know we can always count on is unwavering support from Fire Fighters,” says Stacey Lintern, Interim CEO of Muscular Dystrophy Canada. “Fire Fighters have supported MDC since its inception in 1954, we are incredibly grateful for their continued dedication to our cause and our clients”.

Find out more by visiting filltheboot.ca.

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ABOUT MUSCULAR DYSTROPHY CANADA

Muscular Dystrophy Canada’s mission is to enhance the lives of those impacted with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research. To learn more about Muscular Dystrophy Canada, please visit  www.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

Stacey Lintern appointed Interim CEO at Muscular Dystrophy Canada

For immediate release. April 27, 2020

Toronto, Ontario – The Board of Muscular Dystrophy Canada is pleased to announce the appointment of Stacey Lintern as interim Chief Executive Officer, effective April 22, 2020.

Stacey has been with Muscular Dystrophy Canada since 2012, and has worked in the not-for-profit sector for over 20 years. She has worked as a senior manager in large health organizations and in the government, where she managed organizational development, strategic planning, stakeholder relations, partnerships, and mission delivery. She has held a range of senior positions at Muscular Dystrophy Canada, most recently as Chief Operating Officer.

Stacey is highly regarded by colleagues, clients and stakeholders and her skills and talent will be particularly helpful as the organization navigates the challenges related to Covid-19.
We are committed to doing everything we can to continue to support our clients and their families and to advocate on their behalf.

The Board wishes to thank the outgoing Chief Executive Officer, Barbara Stead-Coyle, who has resigned, for her contribution to the organization.

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ABOUT MUSCULAR DYSTROPHY CANADA

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

MEDIA CONTACT

Stacey Lintern
Muscular Dystrophy Canada
Stacey.Lintern@muscle.ca
647-284-8706
1-800-567-2873 x1104

NMD4C propelling research forward for patients, scientists and clinicians

FOR IMMEDIATE RELEASE – Friday, January 31, 2020

Toronto, Ontario – A new partnership between Muscular Dystrophy Canada (MDC) and the Canadian Institutes of Health Research (CIHR) announces the creation of a new neuromuscular network in Canada.

Led by Dr. Hanns Lochmüller, NMD4C is an integrated research network for patients, scientists, and clinicians to improve outcomes and access to therapies for patients with neuromuscular disorders in Canada.

“We’re absolutely delighted to receive this catalyst funding for our NMD4C network. Because neuromuscular diseases are individually rare, but collectively affect many children and adults across Canada. Working together, pooling expertise and developing shared infrastructure at a national level is essential if we want to make rapid progress towards giving all Canadian patients world-class care and develop new treatments. This is a fantastic opportunity for doctors, researchers and the patient community to come together to do just that, and we can’t wait to get started,” stated Dr. Lochmüller.