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Archive: November, 2013

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The Importance of Education and Advocacy for Respiratory Care

TWD 1In October 2010, Jeff Sparks and Tracy Ryan arranged a presentation on respiratory health with a respirologist in St.John’s, Newfoundland and Labrador. At the time, the presentation was a revelation to clients and staff at the Janeway, who had not heard a great deal about the importance of breathing aids, and respiratory health. Following on that initial presentation, communication was maintained with the Janeway clinic staff on the topic; one of the clinicians subsequently attended the workshop given for healthcare professionals by Dr. John Bach in Halifax in the fall of 2012.

Muscular Dystrophy Canada and March of Dimes held Health and Wellness Information Days for people living with a disability, on October 24 2013 in St. John`s. One of the key components was a workshop on respiratory care by Vital Air. The staff at Janeway not only took part in this initiative, but promoted this event as well. The day turned into a great forum for connecting persons with a disability, caregivers, and professionals on key issues. With lively discussions, and passion, it is evident that there is a need for more advocacy, and spaces to bring together people on disability issues whether it be respiratory care, or transportation.

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Fifteen Years of Volunteering: Profile on George Brinton

George in the officeGeorge Brinton is one dedicated, self-less individual. He has been volunteering with Muscular Dystrophy Canada for over 15 years in our Vancouver office. Over those 15 years, George has certainly seen a lot of changes and growth within the organization, but his reason for volunteering remains the same – help in anyway he can to help find a cure for muscular dystrophy.

“Just because you have a disability, doesn’t mean you can’t contribute to society. If everybody did a little bit to help, it would make a big difference.”

Back in the late 1990s, George decided to be more involved in the organization as he himself has FSH Muscular Dystrophy. George helps out around the Vancouver office with preparing materials for events and  stuffing envelopes among other things. At conferences and regional Walk for Muscular Dystrophy events he helps with registration, provides inspiration… you can always spot George with his Canadian flag flowing behind him off his wheelchair.

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Family takes pride in being role models

Shabotovsky Family

The Shabatoski Family

Team Shabby has participated in the Saskatoon Safeway Walk for Muscular Dystrophy for six years. The Shabatoski family is at the centre of Team Shabby, including mom Jackie, dad Dean, Braiden, 21; twins Samuel and Emma, 10; and twins Tyson and Jackson, 7. Braiden, Samuel and Tyson are affected by Duchenne Muscular Dystrophy.

In 2013, Braiden was the Saskatoon Safeway Walk for Muscular Dystrophy Ambassador.  This was an honour for the family and a great way to include all the family’s friends in their Walk for Muscular Dystrophy efforts. Braiden takes his responsibility as role model seriously, especially as a role model to his two younger brothers. Braiden loves hanging out with Samuel and Tyson, encouraging them to keep their spirits up and enjoy life. He is around to answer their questions and help them through any struggles they may have. Braiden is dedicated to being available to his brothers, and raising awareness through the Walk for Muscular Dystrophy.

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BC Fire Fighters in full gear to raise awareness

fire fighter finishThe Nanaimo Safeway Walk for Muscular Dystrophy started out simple. Dwain King, my co-chair from the Central Island region of the BC/Yukon Fire Fighters Advisors group decided that since Victoria was the only current Walk for Muscular Dsytrophy event on Vancouver Island he would organize one a little farther north. We immediately jumped on board to support Dwain. I somewhat mistakenly sent out an email to my entire address book (over 500 recipients) and was overwhelmed with the immediate support I received in the form of donations to complete the 5 KM walk.

3 km FFI figured I had better raise the bar since I was nearing $1,000, so I announced if I fundraised $1,000 I would complete the Walk for Muscular Dsytrophy in full turn out gear, which is Fire Fighters protective clothing consisting of coat, pants, boots and helmet, adding a weight of approx. 25 pounds.

Well I surpassed the $1,000 mark so figured I had better step it up a notch! If I could reach $1,500 I offered to wear the SCBA (Self Contained Breathing Apparatus) on my back, which accounts for an additional 32 pounds. Walk coordinator Dwain King from Ladysmith Fire Rescue took it one step further saying that if he raised $2,000 he would complete the Walk “on air”, which means he would walk the entire 5KM wearing the Fire Fighter mask and breathing only the air from his self contained breathing apparatus carried on his back. (more…)

Find Something to Care About

Nov Ivana  Before getting involved with Muscular Dystrophy Canada, I spent a year volunteering with the Canadian Cancer Society. I have heard stories, and met individuals that have truly inspired me to push, and fight harder. Just like MD, cancer has many problems with no solutions; answers, but no short cuts. There are a lot times where you find yourself frustrated, and emotionally challenged. There seems to be too many obstacles to overcome, bridges to build, and barriers can be found around every corner – but sometimes within the midst of all that, you find something that makes it all worth it.

The world has proven itself to be full of unexpected twists, and turns. What is important is that we never stop believing, and we never forget the things that are worth holding onto. Mastin Kipp said it the best, “Being of service, and taking the wounds of your life and turning them into lessons, and sharing your experience with others will do more good to you and the world than almost anything else.” I have learned that having an illness is in no way a weakness or means that I am failing. You want to know the biggest reason people fail? The biggest reason goals don’t get accomplished? It is not because they aren’t smart enough, or pretty enough, or strong enough – it is because people make excuses, and sometimes they don’t even start to try. Sometimes you start, but then you just stop. Distractions get in the way, and one day becomes one week, and then one week becomes one month, then a year… then before you know it your life has gone by. There are endless opportunities, and rather than taking them, we like to stay comfortable. Can I blame you? Who doesn’t like being comfortable? Being uncomfortable causes us to feel nervous and anxious, however, being comfortable means you’re not reaching your highest potential.

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