Archive: January, 2018


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Reaching Out To The Health and Social Services (Québec) Minister, Gaétan Barrette

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Muscular Dystrophy Canada (MDC), on behalf of the Canadian neuromuscular community, has reached out to the Minister Gaétan Barrette, Health and Social Services (Québec).

We have reached out to Minister Barette to encourage him to reconsider the position that l’Institut national d’excellence en santé et en services sociaux (INESS) has taken by not recommending Spinraza for reimbursement for the treatment for all types of Spinal Muscular Atrophy (SMA).

We will update our community when we hear back from the Minister.

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Your Gift Today Will Push Us…




  Welcome to 2018! Just like me, you probably wrote a list of resolutions to kick off the New Year. Can I ask you to add curing neuromuscular disorders? It’s on mine, and with the leaps and bounds we’re making in research, I’m feeling hopeful.

  We have big goals for 2018. From finding new treatments to continuing our relentless search for a cure, we have our work cut out for us. But with support from generous donors, like you, we have the resources and passion to make it happen.

  The truth is, our community is a resilient and tough bunch, overcoming the challenges we face together every day. However, watching a loved one struggle in pain is a terrible burden for anyone. For those caring for people with a neuromuscular disorder, it’s a reality they have to face each and every day.

  We know that there is a steep learning curve when building a new life with a complex disorder. And to make things even more complicated, no one experiences a neuromuscular disease the same way. Because of this, we work with our clients to develop a custom and holistic approach to their individual needs, every time.

  In 2018, we will be training more coaches to help our clients navigate through the challenges they’ll face. Our coaches are trained to listen and figure out where clients are in their own personal journey, and then provide them with the tools and resources to get them to where they want to be. Your generous support allows us to work one-on-one with clients, person to person.

As the world steps away from human connection, we’re doubling down on what we’ve always done, and taking a bold step toward it.

  As I travel around the country, meeting clients and hearing their stories, I always come home with new insight into the work we are doing together. Recently a mother told me that, “When my son Ryan was 5 years old he was diagnosed with Duchenne Muscular Dystrophy. This experience is so isolating. No one can understand it unless they’re in it. Even family and friends don’t always understand. Planning a simple outing becomes incredibly complicated. But, fortunately, we have Muscular Dystrophy Canada. Through MDC, we have a healthcare coach. She’s the one I turn to when I need help to get through the tough times. She helped me advocate when the school administrators decided that Ryan needed to stay in his wheelchair all day. And she helped again when they decided he couldn’t go canoeing on his graduation trip.” These are the kinds of stories that convince me we’re on the right path.

  Your continued generosity and dedication to the Muscular Dystrophy Canada community means that clients can count on us for supportive programs and services, while we continue to fund research and champion advocacy efforts. Because of you, we can be that helping hand when families need it most.

  Sharing a story or a smile with a friend is often a great comfort. We are all looking for human connections. But when you live with a neuromuscular disorder, you can often feel isolated, like there isn’t a place in the world for you. This can be a terrifying feeling. To fight the fear, we’ve developed Family and Caregiver Retreats where our clients can connect with others who understand what they’re going through. We know there is strength in numbers, especially when we listen and understand each other. Strengthening these bonds is just one of our priorities for 2018.

  At our last Caregiver Retreat, the wife of an individual with a neuromuscular disorder told me that, “From the moment I sat down for lunch on Saturday and looked into the eyes of the other participants who were virtual strangers, there was an instant connection. I felt they understood me without saying a word.” This is what your donations do.

  We’re confident that the work we’re doing is going to allow us to make an even bigger impact in 2018 because we know you’re with us. We couldn’t do it alone.

  Now is the time to renew your support and join us for the next leg of the journey. Your gift of $35, $50, or $100 to Muscular Dystrophy Canada will mean that more clients will feel less isolated, less afraid, and more hopeful for what tomorrow may hold.

  If, like us, you’re ready to cure neuromuscular disorders once and for all, become a monthly donor and join our Circle of Strength. When we have a steady source of funds, we can spend less time fundraising and more time working directly with clients. It’s also a way for you to spread your generous contribution out over the year.

  Our clients across Canada, from coast-to-coast-to-coast, rely on incredible donors, just like you. We know that you are as committed and ready for a fight as we are. Together, we’re the unstoppable force that will defeat the fear and isolation. We’re the force that will find the cure.

From our MDC family to yours, we wish you a wonderful and prosperous 2018.

Barbara Stead-Coyle e-sig

Barbara Stead-Coyle,

Chief Executive Officer

P.S. This year we continue to push beyond possible to impact more Canadians affected by a neuromuscular disorder. Your gift today will push us further than we’ve ever been.

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High Rise Challenge Sneak Peak

Invitation to the 2018 Montreal High-Rise Challenge


Do you feel like you’re living a dream?
What do you mean?

Eh, we’re close to the hockey, next to the Bell Center.

Yeah, but it’s not the Bell Center you have to look at, Benoit, it’s the tower over there; the Deloitte Tower.

Yeah, you’re in a reserved zone.

Oh, we’re not staying long; we’re moving the High-Rise Challenge.

It’s not the time to get another ticket.

Attention, Attention, the High-Rise Challenge!

I hope we can practice it a little bit.

Sunday, May 20th, High Rise Challenge for Muscular Dystrophy is back.

Wait, it seems to me that people looks at us strangely.

Don’t forget to give the Website too!

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