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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.

Independence Through Innovation

A pilot program providing assistive technology to youth

Assistive-Tech_Playing-Beamz

Thanks to rapidly evolving technology, particularly in the world of gaming, home automation and environmental aids, assistive devices are more accessible and more useful than ever. They help improve quality of life exponentially for young people with neuromuscular disorders.

Removing barriers to simple tasks with assistive technologies

Tasks such as opening doors, switching on lights, accessing phone calls and answering emails aren’t ‘simple’ for those with a neuromuscular disorder. Assistive Technology can remove the barriers from these small chores.

Lise Bleau, an Occupational Therapist at the Stan Cassidy Centre for Rehabilitation has seen the results firsthand. “This program is so exciting: it will allow children and teens to be successful at doing things, using something perceived by themselves and their peers as being very cool.”
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World Duchenne Awareness Day – Watch One Family’s Journey

When their two sons Ross, 20, and Finn, 16, were diagnosed with Duchenne Muscular Dystrophy (DMD), Michelle and Steve Beaulieu decided their family would remain the adventurous travelers they’ve always been. The family’s journey – from diagnosis to next destination – is a story of determination and what life is like for its two youngest children who rely on life support ventilators.

September 7 is World Duchenne Awareness Day. Please take some time to watch this video and see how this family sustained their love of adventure in the face of this challenging disease.

 

Your Wounds Are Part Of Who You Are

‘Bad things happen to good people.’ It’s a phrase I have heard dozens of times in my life. It’s also a phrase that I hoped would stay clear of my family, my friends, and myself. However, sometimes you can’t stay clear forever. This blog is quite the exact opposite of my last one, a total 360. The reason being, there is no way you could ever measure a happy life without sadness in the picture; happiness would lose its meaning.

Everyone tells you to think positive, and you will have a happier and healthier life. As children, we make lemonade, and are taught to see the glass have full. But, there are moments that can change everything. We learn at a young age to buckle our seatbelts, to wear a helmet, and look both ways before we cross the street. We do our best. But sometimes, it makes no difference. Bad things come… and they come out of nowhere. There is no warning. This past summer, my sister had a terrible accident, a close family friend, and aunt died, and I had an accident at work. It was just one hit after the other. I felt like I was getting the wind knocked out of me, while I was still on the ground struggling to pick myself up from the last hit. Usually when something bad happens that affects me, I shake it off. Pretend it’s not there and pay no attention to it. Would it do any good anyway? But, you do need to heal. You need to feel your feelings, things need to be said and you need to go through the whole process, whatever it may be. To allow yourself to heal, you need to be a victim for a moment. After that, you are what you choose to become.

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When Amanda Met Justin

Photo courtesy of Amanda Renneberg

You may have heard about the lucky girl from Sherwood Park, Alberta who was finally able to meet her idol, Justin Timberlake, after months of garnering support on her Facebook page.

Amanda Renneberg – the lucky girl in question – is 27 years old, and is affected by Friedreich’s Ataxia (FA.)

“It’s probably pretty obvious that my life has not completely turned out how I hoped and dreamed it would, but really, who can say their life has traveled this journey exactly how they thought it should? I was diagnosed at 18 with FA. Friedreich’s Ataxia  has drastically changed my life. I choose to deal with things as they come, so future expectations would not hinder me from living a meaningful life. Every person’s future is unknown to them, regardless of FA, so one day at a time is a very important life philosophy to embrace.”

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