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$4.8 Million and counting….

Shad’s 44th annual golf tournament raises $175,000 for Muscular dystrophy

Since 1973, Shad’s R&R Golf Tournament has supported Muscular Dystrophy Canada’s efforts to improving the quality of life for the tens of thousands of Canadians with neuromuscular disorders and taking the lead in research for the discovery of therapies and cures.

This year, more than  200 participants from all sectors of the automotive aftermarket took part in a day of golf, dinner, and prizes with all proceeds going to Muscular Dystrophy Canada. The 44th annual Shad’s R&R for muscular dystrophy raised $175,000, bringing the total money raised since its inception to $4.8 million.

The proceeds from this golf tournament have been invested in world-class research projects that are helping to answer questions about neuromuscular disease and finding ways to improve the medical care and quality of life for the young children that are affected by these conditions. For the first time in history we are seeing new treatments and clinical trials that show incredible potential to slow or reverse the progression of some of the 160 different types of neuromuscular disorders. Now more than ever, people with neuromuscular disorders are living longer and more empowered lives.

All of this would not be possible without the ground breaking research taking place throughout Canada and beyond. This research would not be possible without donors and supports, like Shads, who continue to demonstrate incredible generosity.A very heartfelt thank you to the organizing committee including David, Keith Brad, Marilyn, Samantha and everyone involved. Your dedication to this cause is evident and your dedication so greatly appreciated.

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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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!

MDC Newsletter - Fall Issue -2018

MDC Newsletter – Fall 2018

MDC Newsletter - Winter Issue 1

MDC Newsletter – Spring Issue 2

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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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Advocating for Access: SPINRAZA’s Affect on SMA

Dominic was a happy, healthy and strong baby, meeting all his milestones with flying colors. It wasn’t until he was about 10 months old that his mom, Stéphanie, started to notice some changes. “He wasn’t advancing as quickly as he had been. Having an older child, I just knew that something was off,” says Stéphanie. “The doctors were telling me that everything was fine and not to compare his progression to anyone else’s but I knew in my heart that there was something else going on.”

_DSC4783Stéphanie continued to push the doctors, insisting for more tests and referrals to specialists. By the time Dominic was 18 months old, he was diagnosed with Spinal Muscular Atrophy (SMA). SMA is a disorder that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away their ability to walk, eat, and in severe forms, breathe.

“I think this is one of the most heartbreaking diseases. You have to just sit there and watch your child deteriorate before your eyes and there’s nothing you can do about it,” says Stéphanie.

“You feel like you’ve lost all control. For me, the only way I was able to feel like I still had some control over what was happening was to be as informed as possible. I did a lot of research, I still do a lot of research, I spoke to groups like Muscular Dystrophy Canada and Cure SMA, I connected with support groups on social media, I went to conferences and I talked to researchers and clinicians.”

Since SMA is a rare disorder, many medical teams don’t see it or have to deal with it on a regular basis. Stéphanie worked with Dominic’s medical team to brainstorm new ideas, search for treatments and to provide them with information on the most recent findings and ways of thinking for SMA treatment. About two years ago, Dominic joined a clinical trial for a drug called SPINRAZA™.

“I couldn’t believe the results, and how fast we saw progress.”


“With SMA, it’s never supposed to get better, only worse. After only two months on SPINRAZA™, we saw Dominic begin to progress. He hadn’t been able to sit up by himself and within the first two months of the trial, he could bend over to pick up a toy and lift himself back up. We were blown away”, shared Stéphanie. “We also noticed a huge difference with his sleeping. Before taking SPINRAZA™ we would have to wake him up 10 or more times a night to change his position because he couldn’t roll over himself. Now we don’t have to wake up and he can roll and move comfortably while he  sleeps. Depending on the type of SMA and the age and physiology of the individual, the results may vary but SPINRAZA™ does stop the progression of this degenerative disease which is the ultimate goal!”

In early January, the CADTH announced that they are now recommending SPINRAZA™ for use in treating a subset of SMA Type 1 patients who meet specific criteria. We know there is a lot more work to be done. Muscular Dystrophy Canada will continue to advocate on behalf of the neuromuscular community.


“Access to and coverage for SPINRAZA™ means everything to us. We were very frustrated and disappointed with the recommendation and feel that it will be very costly for those who are affected by all types of SMA. SPINRAZA™ is an effective treatment for SMA, it works, it is safe and this should have been reflected in the recent recommendation. It is completely necessary and so far is the only treatment approved and available worldwide! We have seen the results first hand and are communicating with families around the world who have also witnessed results. We feel strongly that this treatment needs to be available to all patients affected regardless of age or type of SMA,” says Stéphanie.

“Muscular Dystrophy Canada is currently working on behalf of our SMA families and actively asking both INESSS and CADTH to reconsider their positions regarding the use of SPINRAZA™ for the treatment of SMA. MDC’s position is that fair, affordable access to this medication is crucial to clients and a basic right of Canadians. This treatment has the potential to extend and improve the lives of SMA sufferers.” – Barbara Stead-Coyle, CEO, Muscular Dystrophy Canada. 


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