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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.

MDC’s new quarterly 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 - Winter Issue 1

MDC Newsletter – Winter Issue 1

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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.

Ryan

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.”

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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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