Archive: May, 2014

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Muscles In Motion

1795569_600583466689649_1432355312_n2010 marked the first year for Muscles in Motion. An event I had been thinking about for more than five years was finally happening. 2013 marked our third year, tripling our donations and helping create more awareness for those affected with neuromuscular disorders. As we prepare for our upcoming event on May 31st,  it looks like we will again raise even more money and awareness. Below you will find out why this incredible event was designed.

I remember the day clearly when I received a phone call from the specialist. I was 18 weeks pregnant with my first child and my nephew Garrett had just been diagnosed with Duchenne muscular dystrophy. The specialist told me it was urgent that I get tested to see if I carried the specific gene because I only had two weeks to terminate if necessary. I was horrified at the thought and in disbelief that someone would even suggest the possibility. At the time we were just learning what Garrett was about to go through, and there was no way I was getting tested even with all the information we had. I would support my child however it would enter the world. My sister at this time received her results and found she wasn’t a carrier after all, but there was a gene mutation when Garrett was developing.

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Putting the ‘Fun’ in Fundraising

DustinFire Fighters have been volunteers with us since November 1954 when the first fundraising campaign occurred in Toronto, Ontario. Today, over 550 Fire Departments are involved, and Dustin LePage is one of the many Muscular Dystrophy Chair people across Canada.

This year marks Dustin’s first full year as the MD Chairperson for the Robson Volunteer Fire Department in British Columbia, and Dustin and the Department have already planned out many exciting events, and held a successful Fill the Boot campaign!  We wanted to get the inside scoop on what it’s like to be the MD Chairperson, so we asked Dustin some questions!

Tell me about your family connection to muscular dystrophy.

My cousin Troy had muscular dystrophy. He was also my best friend growing up. We both lived in Robson and spent a lot of time together. Even though he had a disease that effects muscle strength, he was the strongest person I’ve ever met; I never once heard him complain about his circumstances. I’m reminded of a time when I was about nine

Dustin and his cousin Troy

Dustin and his cousin Troy

or ten, and I was pushing him in his manual chair down a gravel driveway. Well, the front wheels dug into the gravel and he flew out landing on his face, bloodied and all. I was crying and he just looked up at me, awkwardly because he was crumpled and bloodied on the ground, and said, “Quit crying you baby and just pick me up!” He NEVER complained and instead was a very upbeat and positive person. Anyone that knows me today would say that I have those same attributes, and while I know there are many factors that shape us into the type of person we are, I’m 100 per cent certain that I owe those attributes in myself – to a large degree – because of my association with Troy. Even though he passed in 1997 at the way-to-young age of 24, to this day he positively affects my life by making me not sweat the small stuff and being grateful towards life in general. After all, if he never complained about his circumstances, how the heck could I even complain or not be grateful for mine?

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The Montreal High Rise Challenge: A spectacular and unique charity event!

Logo Défi_ScottFriday, May 16th, at the Stock Exchange Tower

Fearless Fire Fighters, policemen, paramedics and members of the public will soon be celebrating 60 years of involvement!

Imagine that you want to climb a flight of stairs to go meet the love of your life, but you can’t because your muscles won’t let you…. For 60 years now, Fire Fighters from all over Quebec have been putting their hearts to work by organizing a series of events on behalf of Muscular Dystrophy Canada, who steadfastly supports people whose muscles have stopped working. The flagship of these events is the Scott High Rise Challenge, which has been held every year since 1997.

Adrenaline, muscles and heart for a worthy cause.

The Scott High Rise Challenge is the only event of its kind in Canada aimed specifically at emergency workers, but also open to the general public. It’s the second largest high rise challenge in North America, behind the Seattle event in the U.S. Climb. Conquer. Cure. Every dollar raised contributes to the advancement of research and helps thousands of adults and children with muscular dystrophy and their families. (more…)

Team Ambassador raising the bar for the Saskatoon Safeway Walk for Muscular Dystrophy

 

Georgia and her sister Charlotte.

Georgia and her sister Charlotte.

Since our children have been diagnosed with Spinal Muscular Atrophy (SMA), our awareness regarding people with neuromuscular conditions has skyrocketed. We are starting to recognize that although there is no current cure for many of these conditions (including both SMA and other forms of muscular dystrophy); walks such as these not only increase support for these specific conditions, but also increase societal awareness for the daily difficulties that must be overcome for both the people living with the condition, and their caregivers. There is a current goal by our government to make Saskatchewan the most livable province in the country for people with disabilities, and having walks such as these continue to support this endeavour.

Everyone feels at least some things in their life are out of their control, but when Georgia was diagnosed with SMA we felt that almost ALL things were out of our control. We were afraid and helpless, and didn’t know what to do. But the tide is turning. We are no longer asking the ‘why us’ question, but rather the ‘what next’ question. And that is where walks like this are so vital. It is time to look at today, tomorrow, and beyond. How can we support those with neuromuscular conditions today, and cure the conditions tomorrow and beyond? Public knowledge and support into these devastating conditions WILL lead to tangible changes.

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EIA Panelist Maayan Ziv on Living Life to the Fullest

Maayan

Maayan Ziv

Among the many sessions, workshops, and panels at Empowerment In Action are many inspiring and knowledgeable people who are looking forward to sharing and connecting with attendees. Maayan Ziv is one such speaker. She will be participating in the ‘Living Life to the Fullest’ panel. Maayan is an accomplished photographer, recipient of a Queen’s Diamond Jubilee medal, and is looking forward to traveling to Vancouver, BC to share experiences.

So what can you except from her participation in the panel? “I would say that I will be giving a truthful, and raw perspective of my life, along with its challenges and successes,” states Maayan.  “I’m going to tell it as it is – answer any questions as honestly as possible and share my life’s story that’s brought me to where I am today.” (more…)

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