We’re very excited to share our Meet The Fellows video series with you.
Through these videos, prepared in partnership with Neuromuscular Disease Network for Canada (NMD4C), you’ll learn more about the five incredible fellows who are dedicated to neuromuscular disorder (NMD) care and research.
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!
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!
The 25th High Rise Challenge takes place Saturday, October 8, 2022. Join us, and hundreds of Fire Fighters, paramedics, police officers and members of the community, as they climb the 36 floors of La Cité de l’énergie in Shawinigan, Quebec – twice – for a total of 1,190 steps.
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
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.
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
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)
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
Friday, May 6, 2022
Muscular Dystrophy Canada and Independent Living Canada are pleased to announce that consultations for the Disability Inclusion Action Plan, as part of their project “Bridging the Gap: Between a Lived Experiences and Policy: A Community-Led, Capacity Building and Knowledge-Exchange Approach to the Disability Inclusion Action Plan” funded through Employment and Social Development Canada (ESDC), begin this May!
The Pillar Leads together with their supporting organizations have been working diligently to roll-out consultations to ensure we reach out to persons with a lived experience of a disability, individuals with a disability, and hard-to-reach marginalized, intersectional, under-represented groups and stakeholders.
Accessibility is a key priority, and all consultations will be held in an accessible and safe environment.
For more information about the project:
If you’d like to take part in the consultations, please contact DIAP Project Co-ordinator Catherine MacKinnon at: diap@ilc-vac.ca
