News

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”

YOU’RE HELPING MAKE CLASSROOMS A SAFE AND ACCEPTING PLACE FOR ALL

Imagine being the only child in your class who has a neuromuscular disorder. Imagine being the only one who even knows what a neuromuscular disorder (NMD) is.

During a time when being understood, included and involved is critical, classroom environments can be a daunting place for anyone affected by an NMD. Muscular Dystrophy Canada’s AccessAbility program, graciously funded by donors like you, and the Canada Post Community Foundation, is working to change that for students.

Muscular Dystrophy Canada’s (MDC)Service Specialists work with students to develop an accessibility presentation focusing on their unique needs and abilities. This empowers the student to share their abilities with classmates and teachers, provide information to educators so they can expand their knowledge on enhancing accessibility and inclusion in schools, and decrease the negative stigma associated with disabilities.

Learn more “YOU’RE HELPING MAKE CLASSROOMS A SAFE AND ACCEPTING PLACE FOR ALL”

Additions to the Equipment Program Funding!

Additions to the Equipment Program Funding!

Because of donors, like you, MDC has added a substantial list of Assistive Technology to its Equipment funding list.

Assistive technology helps people affected by neuromuscular disorders (NMDs) to improve their health, safety, independence, and t increase their participation in education, the workforce and their community. These devices include; smart watch or wearables for fall detection and medical alert, communication devices, Robotic arm or eating device, Smart door locks and medication dispensers to name a few!

Learn more “Additions to the Equipment Program Funding!”

THE BOOTS ARE BACK AND WE NEED YOUR HELP!

No one has missed seeing Fire Fighters out in the community supporting individuals affected by neuromuscular disorders more than Fire Fighters themselves.

“We are so happy to be in a position where we can bring the boots back out into the community to raise funds and awareness.”

Dan Hamel, Chair of the National Fire Fighter Relations Committee

Learn more “THE BOOTS ARE BACK AND WE NEED YOUR HELP!”

Shad’s R&R annual golf tournament

In 1973, the late Fred Shaddick and several of his associates, mostly from the automotive aftermarket sector, decided to get together for a fun day where competitors put business aside to focus on the larger cause of raising funds and awareness for Muscular Dystrophy Canada.

Since the first tee off 47 years ago, the Shad’s R&R annual golf tournament has raised over $5.2 million for life-changing neuromuscular research.

Learn more “Shad’s R&R annual golf tournament”

Finding cures for neuromuscular disorders in our lifetime

This is the vision that compels us at Muscular Dystrophy Canada to push forward. To continually work to enhance the lives of those affected by neuromuscular disorders by providing ongoing support and resources while relentlessly searching for cures through well-funded research.

Each April we turn the page on our fiscal year, taking a moment to acknowledge accomplishments and look to the future.

I am so grateful to look back on what our donors have made possible.

Successes such as expanding newborn screening for Spinal Muscular Atrophy (SMA) across the country, funding the most innovative and promising research, and continuing to work with our clients to meet their goals, are all reasons to celebrate.

Without your generous support, there would be no celebration, and I cannot say thank you enough.

But this is not an end, it is only the beginning and I am so excited for what this fiscal year will bring.

Which is why I hope you will consider making a gift today.

Every donation is a lifeline to a community of over 50,000 Canadians affected by neuromuscular disorders. This is especially true for youth who are navigating the tumultuous transition from child to adult. To better serve them, we are analyzing gaps and needs, creating tools specifically for youth and developing new partnerships with like-minded organizations.

This is just one example of what donors will make possible this year. Whether building programs for youth, increasing support for time-sensitive research projects or collaborating with clients or families to meet their goals, every dollar matters.

We are committed to bringing a voice to and making a difference for those affected by neuromuscular disorders but we can’t do it without you.

Thank you for being a part of our community. I hope you are as excited about where we are going as I am. Together we will make a difference.


Stacey Lintern
Chief Executive Officer

Donate now

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