Category: Press Releases

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”

Funding for first-ever National Strategy for Drugs for Rare Diseases announced

FOR IMMEDIATE RELEASE March 22, 2023

Toronto, Ontario – Muscular Dystrophy Canada applauds the Government of Canada for committing $1.5 billion over three years in support of a National Strategy for Drugs for Rare Diseases to help increase access to, and affordability of, promising and effective drugs for rare diseases to improve the health of patients across Canada.

“MDC works with Canadian Fire Fighters, donors, volunteers and other like-minded organizations to break down barriers for the neuromuscular community. The major barriers that exist for our diverse community, which consists of individuals with rare and ‘ultra-rare’ neuromuscular disorders, are lack of cures and delayed – out of reach treatments. So this announcement is great news for our community,” said Stacey Lintern, CEO, Muscular Dystrophy Canada. She added, “we are excited that this announcement has been made but time is of the essence for many rare diseases and the sooner we can move this from strategy to action, the better it is for our community.”

This long-awaited announcement identified four areas of focus for the national strategy and funding support for provinces and territories to improve access to new and emerging drugs, enhance access to existing drugs, early diagnosis, and screening for rare diseases.

“The areas of focus align perfectly with the work that MDC is already doing such as ensuring early diagnosis and clinical genetic testing. We know access to an accurate diagnosis, coupled with early access to treatments, are important for optimal outcomes and better quality of life,” said Lintern.

“MDC welcomes a strategy where the patient and family are at the forefront and that supports an evidence-based care journey. We are committed to working with our partners like the Neuromuscular Disease Network for Canada (NMD4C) to help make that happen, and bring about better diagnostic tools, support for clinical trials and evidence that supports decision-making. We look forward to a time when the neuromuscular community has access to accurate and early diagnoses, life-changing treatments, and supports regardless of where they live, their age or the rarity of the condition.”

The full Government of Canada announcement can be read here

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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.

FOR MORE INFORMATION CONTACT:

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

Community Statement: Update on Deflazacort®/Calcort® Availability

February 24, 2023 – In late January, we became aware of a possible Deflazacort®/Calcort® supply and access issue in Canada. Deflazacort is the most commonly used corticosteroid prescribed in Canada and an affordable option for our Canadian Duchenne muscular dystrophy community. We learned that the problem was primarily due to manufacturer and distributor changes and a need to increase the price.

Muscular Dystrophy Canada and Defeat Duchenne Canada partnered to resolve the issue quickly so a shortage could be avoided, and individuals wouldn’t have to potentially switch to prednisone (as this was a concern brought to us by families). At the same time, together, we worked directly with families to better understand the issue at a local (pharmacy) level.

While the impact did not become widespread, we know of a few Duchenne patients and families directly impacted.

We are pleased to report that a shipment of Deflazacort®/Calcort® arrived last week, and inventory is available for the entire country. There is a price increase (approximately $50 for 60 pills) and a change in format (pills in a box vs. sleeve format).

The new manufacturer has confirmed that the backlog in the market has been solved and will provide this critical product to the Canadian market from now on. We will continue to follow this issue closely as we recognize how vital Deflazacort is for people with Duchenne muscular dystrophy. We look forward to ensuring a sustainable supply of Deflazacort and good access to other approved drugs prescribed for managing and treating neuromuscular disorders in Canada.

If you are still experiencing challenges accessing Deflazacort®/Calcort®, please contact us at research@muscle.ca or call 1-800-567-2873 ext. 1114.

Thank you,

Stacey Lintern
Chief Executive Officer
Muscular Dystrophy Canada

Perry Esler
Executive Director
Defeat Duchenne Canada

$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.”

Learn more “$360,000 in fellowships awarded to advance neuromuscular research and healthcare”

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 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”

B.C. newborn screening expands; early detection improves quality of life

Muscular Dystrophy Canada is overjoyed that babies born in British Columbia will now be screened for spinal muscular atrophy (SMA). Congratulations to the Government of B.C. on taking this important step that will lead to early diagnosis and treatments that will have life-changing results for individuals and families. Access to the earliest diagnosis will ensure that patients have access to the right treatment and healthcare at the right time, resulting in the best health outcomes for patients.

Celebrating the heart and soul of the Canadian neuromuscular disorder community

At Muscular Dystrophy Canada (MDC) we value the incredible community across the country who champion our mission with courage, determination, and passion. Through the Dr. David Green Awards program, we recognize and celebrate these incredible groups and individuals each year.

We are excited to announce the list of our esteemed 2022 award winners. These individuals show extraordinary commitment to raising funds, increasing awareness and advocating for the neuromuscular disorder (NMD) community, supporting continued research, engaging other community members and building positive connections.

“MDC is extremely fortunate to have such incredible individuals and groups committed to supporting our mission and the Canadian NMD community,” says Stacey Lintern, CEO, Muscular Dystrophy Canada. “Volunteers are the backbone of our organization. They fundraise, share creative ideas, give their time, contribute their experiences and help to advance advocacy efforts, research and programs and services. Thank you doesn’t even begin to cover just how appreciative we are for each and every one of this year’s recipients.”

2022 Dr. David Green Award recipients

Quebec announces policy on rare diseases

Muscular Dystrophy Canada applauds the Quebec government for leading the way towards a rare disease strategy for Canadians by announcing its own rare disease policy.

The Minister of Health and Social Services, Christian Dubé, announced the establishment of the first Quebec policy for rare diseases on June 6, 2022. The policy aims to optimize the accessibility of quality health care and services that are safe, fair, inclusive and adapted to the specific needs of patients with rare diseases and their families.

“This is a great step forward for the rare disease community, and will perhaps motivate other provinces to do the same,” said Stacey Lintern, CEO, Muscular Dystrophy Canada. “Having our provinces prioritizing and working on rare disease policies, and collaborating with each other is the next big step towards developing a national rare disease strategy.”

Read the full release
(French only)

All Canadians deserve access to life-changing treatments

While therapies exist for spinal muscular atrophy (SMA), many of them are out of reach for adults. Recently, a CTV article featuring Nouma Hammash highlighted the disparity that exists depending on your age, and where you live in Canada.

“For instance, in Quebec and Saskatchewan MDC clients, like Nouma, have access to life-changing drugs. In other provinces and territories that is not the case. Muscular Dystrophy Canada (MDC) urges the government to give all adults access to these treatments because of the incredible outcomes that are possible,” said Stacey Lintern, CEO, Muscular Dystrophy Canada.

At a roundtable discussion, attended by twelve individuals affected by spinal muscular atrophy, from across the country, MDC heard that geographic location, age, lack of qualitative data and a piece-meal approach by governments all prevent Canadian adults from accessing treatments that could radically improve their quality of life.

“In a neuromuscular disorder like SMA, access to treatments are critical to achieving the best possible outcomes. For Canadians affected, it can mean the difference in how quickly a condition progresses and as a result, the way they walk, feed themselves and for some even breathe,” said Homira Osman, VP, Research and Public Policy, Muscular Dystrophy Canada.

If you would like to learn more about treatments and how to access them, please contact the Research Hotline at: research@muscle.ca.

You can also find information about access to treatments and submissions to government here: muscle.ca/services-support/advocacy/access-to-treatments