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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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Learn to Make Yourself Happy

 Happiness. You can’t fight the feeling when you feel it, and you can’t hide it when  you crave what it used to be. I thought certain aspects of life might tear me down –  especially with what others might think – but I have never allowed myself to be  defined by what other people had to say about who I was. It was through lessons,  and challenging myself that got me to where I am now. I learned to put myself first.  Yes, sometimes there are individuals who see my flaws, and perceive them as  something they don’t want to deal with –it’s just easier that way. Unfortunately, I  cannot walk away from myself, and I’m not sure I ever would. I am able to accept my  weaknesses, and nobody can use that against me. I know who I am, and who I am  not. Yes, we all want to be accepted, and loved. But it has to start with yourself.

I want you to be happy. I want you to not rush getting a mortgage, getting married,  or growing up. When I was younger, all I wanted was to grow up. I wanted to wear  make-up, and drive a car and feel the wind blowing in my hair. Now, I’d trade  everything to start over, and appreciate those days spent making snow forts, and  eating popsicles. You can’t go back, but you can step back. When I stepped back, I  had a chance to see what I could not see before. I saw what was worth fighting for, I felt my life get brighter, and at the same time I felt my heart become emptier. I found kindness where I did not even know it existed. So have patience in today, in tomorrow. Learn to love yourself, even within in the things you cannot change.

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