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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.”

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“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.

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“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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My Journey to Success

image (4)With the 2018 Winter Olympic at a close and the Paralympic games about to begin, it is a time of reflection and amazing memories for me. It was eighteen years ago that I competed in my first Paralympic games, and somehow it seems like just yesterday. My journey to the top was not without sacrifices though. I missed out on many “normal” adolescent activities, from missing school, to skipping prom. But the drive I had to compete was greater than any prom.

Living with a Neuromuscular disorder meant that I was faced with many things out of my control. There were painful therapy sessions, multiple doctors’ appointments, and many more un-pleasantries that come included in the backpack of MD. But every time I dove into the water it was as if I was taking off that heavy backpack and regaining control of my life. I owned the water and I was ready for the whole world to see that. In 2000 I competed in Sydney Australia Paralympics. I can still close my eyes and feel the excitement of walking onto the track during opening ceremonies and hearing “CANADA” called out. I had made it. The countless hours in the pool, the dedication to push a little harder every day, and yes, even those sacrifices I had made, all came down to this. 

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I will never forget walking around the track hearing the people cheering and knowing that the next ten days were going to change my life forever, and I was just fifteen years old. Like any 15 year old, I was pretty pumped about the cool new threads I got to wear, and the attractive athletes surrounding me. However, when it came time for business, I had a hunger to win, and a desire to prove that MD was not going to hold me back. I broke three world records and won three gold medals. I can still recall the way I felt diving into the pool for every race, and power I felt in my fingertips as I touched the wall to stop the clock. Later, standing on the podium, hearing the national anthem, and looking into the crowd and seeing my family was exactly the reassurance I needed to know that the sacrifices were all worth it. The maple leaf became so much more to me than a symbol of our country’s flag; it became MY symbol of strength and perseverance.

That hunger and drive I had to compete was not entirely satisfied after the 2000 games, and so I went on to compete at the 2004 Paralympics in Athens Greece. These were the toughest races of my life as they all were one hundredth of a second apart from my competitors. My first race in Athens I placed forth. I was heartbroken that I was not going to be standing on the podium. That heartbreak pushed me to dig deep and reset my focus. I went on to win a silver and two bronze medals there, and to this day those medals mean just as much to me as my golds from the 2000 games.

When you dare to dream and set small goals in attempt to achieve that dream, that bigger goal, you allow yourself to push beyond possibilities you every thought possible. While attending the closing ceremonies and standing amongst competitors, now turned best of friends, the realization of dreams turned reality set in for all of us. We understood that together we were changed as athletes and as individuals. We had set a goal and achieved that goal.

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Whether I am reflecting on my life as an elite swimmer, or my life as an individual with a neuromuscular disorder, I cannot deny the parallels that exist between the two. In order to become a world record holder and gold medalist, I had to ensure I had the right team of people behind me all the way. I also had to advocate for my needs and ensure I had the proper access to the equipment that would help to enhance my training, and therefore lead to the desired out comes.  The same can be said for dealing with a neuromuscular disorder.

My Olympic experiences have shaped me into the person I am today. I am so grateful that I am able to now be a part of the Muscular Dystrophy Canada team. A team that is focused on giving everyone living with a neuromuscular disorder the ability to dream and reach their full potential. I’d like you to watch these 2018 Olympics and Paralympic games, and as you do, take a moment to reflect on your dreams. Remember it is never too late to start dreaming. Enjoy the power of the flame.

– Danielle Campo-McLeod

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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…

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  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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