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International Volunteer Day

Today, on International Volunteer Day, we thank and celebrate the wonderful group of supporters we have at Muscular Dystrophy Canada. From clients to family members, community supporters to like-minded organizations, healthcare professionals to Fire Fighters and beyond, you are making a difference in the lives of those impacted by neuromuscular disorders.


Thanks to your ongoing commitment to MDC, we are able to provide more programs and services, invest more in research and continue vital advocacy efforts! You ignite our passion.

Thank you for being awesome today and every day!

Muscular Dystrophy Canada is calling for submissions of digital artwork! The chosen piece will be utilized in the creation of our Dr. David Green Awards. We are seeking artwork/photography produced by MDC clients that represents our brand. Potential themes could include community, cure, passion, ignite, hope and much more!

If interested in submitting artwork please send high resolution files to Jeff Sparks, Director, Volunteer Engagement and Human Resources at by February 15, 2019.

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Babies with SMA to be covered in BC for Life Saving Drug

Different types of Pills

Muscular Dystrophy Canada congratulates the BC government for their leadership in providing this important treatment to children impacted with SMA Type1. We continue to work tirelessly with governments and partners to ensure more Canadians with a neuromuscular disorder have access to the latest treatments.

We were please to participate in the first review of Spinraza with CADTH and INESSS through our patient submission and we have completed a second submission encouraging them to revisit the use of Spinraza in other types of SMA.

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Learn more about Spinraza

Spinzara to be Proviced for SMA Type 1 Patients
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The Tomesch Family Encourages Others To Live Their Lives

Tomesch family encourages others to live their best life and pursue their dreams

“When our son Jason was just two and a half years old he was diagnosed with Duchenne Muscular Dystrophy, a degenerative disease where your muscles continually deteriorate and daily tasks become more difficult as your body weakens,” says Jason’s mother, Sue.

Jason 2

Due to the progressive nature of neuromuscular disorders, families often experience a lot of bad news and have to overcome new challenges regularly. Five years ago, Jason was critically ill with aspiration pneumonia and spent six months in the hospital. He cannot eat, drink or talk loudly as he has a trache and feeding tube. He also relies on oxygen and a ventilator to breathe.

These circumstances do not define him as a person. Jason is now 25 and has a very important message to share with others who face similar challenges: Don’t be afraid to live.

“We so often focus on the negatives, the things we can’t do, the fear. But there is so much more than that. Get out there and live the life you want,” says Jason. “I still do so many of the things that I love and I want to encourage other individuals with neuromuscular disorders to continue to pursue their passions as well!”

“What we love about working with Muscular Dystrophy Canada is that they really want to help you have the best life that you can! And they provide you with the information and resources to do that,” says Jason.

“Connecting with others who have similar experiences or have faced similar challenges has been very helpful and inspiring for me. I hope others who are facing a new diagnosis or are struggling will reach out to these communities for support and friendship,” says Jason.

Jason 1

“Muscular Dystrophy Canada has helped us with many things since my diagnosis but specifically over the last five years. They helped us purchase a much needed track lift and other vital equipment, they helped us advocate for coverage that we weren’t receiving. They have supported us by providing information about grants, funding, and possible treatments which we weren’t aware of,” says Jason. “They have also provided me with opportunities to share my experiences with others. I have been asked to present to numerous groups including Walk participants. I’ve really enjoyed being able to share my story with others and connect with other members of my community.”

Jason and his parents, Sue and Dave, are very involved with the Walk for Muscular Dystrophy. Jason’s team has been one of the top fundraisers each year. They have raised an incredible contribution of more than $35,000 over the years which helps Muscular Dystrophy Canada continue providing critical support, funding and resources to all those affected by neuromuscular disorders in Canada.

“We know how hard it is to face a neuromuscular disorder diagnosis, which is why we continue to be so involved in events like the Walk for Muscular Dystrophy,” explains Jason. “We don’t want to see others go through the same struggles that we have faced. Any chance we have to bring more awareness to muscular dystrophy, the better.”

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Muscular Dystrophy Canada’s Newsletter!

Screen Shot 2018-03-08 at 3.41.49 PMMessage from the CEO


We are pleased to present our new quarterly newsletter! We hope you enjoy getting to know us better, staying informed and receiving exciting news about Muscular Dystrophy Canada and the clients we serve.

Over the last two years, Muscular Dystrophy Canada has made great strides in creating greater alignment nationwide for our people, moving more money to mission activities and raising the profile of our cause with those who can make a difference.

I would like to thank you for your ongoing support and dedication as we continue to make progress, Pushing beyond Possible and striving to serve more Canadians dealing with the realities of a neuromuscular disorder. We could not do it without you, our loyal donors and supporters. 

Thank you and enjoy!




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Navigating a neuromuscular disorder diagnosis needs personalized support efforts

“It seems like only yesterday, my son Ryan was at taekwondo and another parent, who was a neurologist, approached me. He had been watching the class and noticed Ryan was having trouble getting up off the floor. He suggested that we have him tested for muscular dystrophy,” says Ryan’s mother, Allison Belme.


A muscular dystrophy diagnosis can be a rollercoaster ride of emotions. Because it is a rare disorder, many parents and individuals are unfamiliar with its progression, the resources available, and what daily life will look like post-diagnosis.

“After Ryan was diagnosed with Duchenne Muscular Dystrophy (DMD) when he was five and a half, we felt lost and alone – we did not know where to turn for help. Then we met Karen from Muscular Dystrophy Canada (MDC),” says Allison.

“I relied on MDC to help me advocate when the school administrators decided Ryan needed to be in his wheelchair at all times. And again, when they decided he couldn’t go canoeing on his graduation trip.” 

After a diagnosis, things continuously change. There are many stages of emotions as you discover new challenges. No two people experience a diagnosis the same way which is why MDC provides clients with personalized support.

“MDC calls what Karen and others across Canada do – System Navigation – I call it being a lifesaver. One thing I can always count on when things get overwhelming is that Muscular Dystrophy Canada will be there to help me solve problems and put things into perspective.”

“Now, as Ryan turns 15, I look at him and see a young man who is growing in confidence and independence, someone who is trying new things and learning to advocate for himself.  As he connects with others, through sport – his powerchair hockey team just won nationals last summer (pictured above), through camp and through fundraising events and walks, I can see how far we’ve come since kindergarten. I share our story, as a chance to say thank you to everyone who donates to Muscular Dystrophy Canada – your support has made such an impact on our lives!”


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