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Archive: January, 2014

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Speaking of Adventure

I recently watched an interview with Diane Sawyer and I really liked a piece of advice her father gave her. He said, “Do what you love, do it in the most adventurous place, and make sure it helps people.” I had a previous blog that was all about the importance of being more involved and helping as much as you can. Now, I am hoping to cover the adventurous part of Diane Sawyer’s father’s advice.

There will be a lot of people telling you what is best for you. I am sure there are lots of people who want to keep you inside a safe little bubble and tell you that because of your disability or some other limitation (money, education, etc.,) that some things just aren’t possible for you. Can I tell you something? Their wrong… Before my diagnosis was even confirmed, my parents were skeptical about sending me to school away from home because they knew some things would take longer for me to do and I would get tired more easily, but I did not want that kind of life. I did not want to not try. So despite everything, I went my own way. I had a feeling inside me, a light that was not ready to die down. At the end of the day, I did not want to stop living the life I dreamed for myself just because something was trying to slow me down. Yes, I have had to take some detours and maybe running the marathon isn’t in the books for me anymore, but it doesn’t mean I have to give up on all the adventures. Living on my own for five years, I learned to be who I was and learned to live with all that I was not.

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Thames Valley One Day Fun Day

thamesvalley2I am writing a quick post to tell of a wonderful opportunity I had in October 2013; I  shared a fun filled day with the staff, and families of the Thames Valley Children’s Centre (TVCC) in London, Ontario.

“On October 19, 2013, TVCC NM Clinic Team held our first One Day Fun Day at Easter Seals Camp Woodeden. We had ten campers attend,” says Occupational Therapist Cheryl Scholtes. “We played games in the gym, made chocolate chip cookies – YUM! – had a scavenger hunt, dressed up – we looked pretty silly – and finished with a campfire with skits and songs. Moms and Dads, Grandparents, and siblings joined in the fun at the campfire too. I especially liked the campfire songs! The day and the venue were terrific.”

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How It Began

 

Untitled-5In order for any organization to be formed, there must be a need. To be successful in filling the need, the organization must have strong leadership, and clear goals, in addition to a fueling passion. All of these apply to the forming of The Muscular Dystrophy Association of Canada (renamed Muscular Dystrophy Canada in 2003.)

Two good friends, Arthur Minden, who ran a law practice that grew to be a prominent firm, and Dr. David Green, an Otolaryngologist as well as a plastic surgeon, became aware of the need for research and resources for those with neuromuscular disorders when Dr. Green’s son was diagnosed at the age of seven with Duchenne Muscular Dystrophy. Mr. Minden also had a son the same age, and wondered why Dr. Green’s son and not mine? It was hard to know that one boy had the whole world in front of him, while the other did not. Mr. Minden and Dr. Green, together with other friends and families with the same goals of finding a cure or control for neuromuscular disorders formed the MDAC in 1954. First meetings were held in the founders’ homes, and together they grew the organization with passion and dedication to the cause. The mission that drove the Untitled-4organization’s work, and still does, is to enhance the lives of those affected by neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well funded research.

Mr. Minden was the President of the Muscular Dystrophy Association of Canada from its inception in 1954, through to the ten year anniversary in 1964. He brought Canadian Fire Fighters on board with our mission.  Fire Fighters have remained our number one supporters through all our 60 years. Mr. Minden was also instrumental in connecting Jerry Lewis to the Canadian Association, paving the way for the Labour Day Telethon to be broadcasted in Canada. Mr. Minden became Chairman of the Board until his passing in 1966.

VOLUNTEER_Dr. David Green cofounderDr. Green acted as Vice-President of the Muscular Dystrophy Association of Canada from its founding until 1962. Dr. Green took on the challenge of introducing the MDAC into a market that many felt was already overrun with charities; however, a few years later in 1958, MDAC was recognized as one of Canada’s top 10 health organizations.  After this period, Dr. Green became President of MDAC after Mr. Minden retired from the position, and took over the Chairman of the Board position after Mr. Minden’s passing until 1976. During his period of being Chairman of the Board (1966-1976) beginning in 1967, Dr. Green was also the Chairman of the Medical Advisory Board. In 2002, Dr. Green was awarded with the Queen’s Golden Jubilee Medal for his significant contribution to Canadian society.  Dr. Green passed away in 2007. In 2010, the National Awards were re-named the Dr. David Green Awards, and they are rewarded to showcase the contributions of individuals or groups who inspire, motivate, and share their commitment with others, and foster Muscular Dystrophy Canada’s vision, mission, and values.

 

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60 Years of Progress. A Community of Hope

At the start of every year, everyone sets goals that will make this new year the best yet. With 2014 upon us, we at Muscular Dystrophy Canada are marking our 60th year of progress and achievements. We are very excited to share with you many stories, photographs, and milestones from these 60 years – we are also looking forward to receiving your photographs and stories!

Each month, we will be revealing five pieces to the MDC puzzle on our new webpage dedicated to our 60th year (which will be available starting on January 15th,) and the puzzle will be complete by the end of 2014! Return monthly to find out what the next batch of stories are! The stories may include photos, quotes, research, excerpts from years past, and more!

Make sure to also follow us on our social media pages (listed at the end of this post,) and sign up for our bi-monthly e-newsletter moveit! Stay connected throughout the year and beyond!

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A Message from the President, an excerpt from the first Annual Report

Letter from President

Less than one year ago The Muscular Dystrophy Association of Canada was granted a charter by the Secretary of State. This event climaxed the efforts of a small group of men and women in various centres across Canada to awaken public interest to the need for a crusade against muscular dystrophy.

In November 1954, the Association embarked on its first nation-wide campaign to raise funds. We were extremely fortunate to enlist the help of the Canadian Fire Fighters in this drive. The Canadian people generously donated more than $200,000 to our cause.

The primary purpose of our national organization is to foster research into the causes of muscular dystrophy. In the short interval since funds became available for this purpose six research projects have been begun in Canadian institutions. Much of this work is of necessity of a basic nature and eventual benefits may accrue only after a long period of waiting and experimentation. Nevertheless it represents the surest way towards success in out fight against muscular dystrophy.

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