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Archive: June, 2014

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Supporting Our Cause

Virginie and Stephen at the Canadian Death Race last summer

Virginie and Stephen at the Canadian Death Race last summer

I learned in English that if you do not capture your readers attention within the first few minutes, you will loose your readers. It’s why I’m so impressed with authors who can write something exceptional, in the very mundane. A while ago I was challenged to read Anne of Green Gables. I not only read the first book, but finished the entire series. I, a picky reader, was enthralled with the character development.

My wife and I have been training all year to run 100 miles. The story is not about the running though. Supporting our cause has gone much further than that. As I look back, I’m astounded at all the experiences that we’ve been able to share. Most of them are emotional. Perhaps that is a good thing; the more I learn about people, the more I realize that our emotions are what makes us who we are. It’s what makes a skinny red haired girl with braids an international superstar. We can relate to the emotions.

On Saturday, June 14th, at the River Valley Revenge Ultra, after almost 3 hours I was beginning to question my resolve. A fine young lady caught up to me and ran with me. We talked about the race season, and about some of her running goals. When we got to a narrow single track section, she offered to let me pass her, to which I whole heartedly laughed and said, “Are you serious?” She understood what I meant, and so she lead fearlessly on. If she is reading this, I want her to know I tried to catch up and say thank you. I just about did before Rundle Park, but you were fast in Rundle. Thank you for offering me the gift of thinking about something else.

The Clossons

The Clossons

My wife grew up with Duchenne Muscular Dystrophy in her home. When we began having children, I remember us talking about how we wanted to create a family. We had thought about adoption, but as deeply spiritual people, we thought, prayed, and then pondered on each child, before we went ahead with anything.

Duchenne muscular dystrophy is carried in the X chromosome of healthy female girls. Because girls always have 2 X chromosomes, they will almost always have a good copy of the X chromosome containing the gene responsible for the creation of dystrophin, which is responsible for maintaining muscles.

Our two beautiful daughters may carry the disease, and as such may need to be careful when planning their families. Our son Baden inherited the good X. We were prepared for the challenge of raising a boy though. Virginie has two brothers (Lehi and Mathoni) who have since passed away from the effects of the disease. Her mother spent every night faithfully sleeping in the same room with the boys. She would turn them in their beds at night because they were two weak to roll over themselves. Her trained ear had become very sensitive to even the slightest moan.

Virginie and Stephen at the Canadian Death Race last summer

Virginie and Stephen at the Canadian Death Race last summer

It’s difficult to describe all the love and service that happened within the walls of my wife’s childhood home. It went beyond being selfless. It was a way of life. Everyone had to pitch in to make things work. When I was courting Virginie I was also expected to help out. I went on a scout camp with Mathoni, the younger brother. I slept in the same tent and turned him and made sure I could help with whatever he needed. To say my upbringing was different would be a gross understatement. I recall being with Mathoni that weekend in a quiet grove of trees helping him go to the bathroom. He instructed me to ‘take it out.’ I turned beet red. I think it made the whole situation even more enjoyable for Mathoni. He responded to me with patience, and with a certain amount of mischievous pleasure in his eyes. Yes, I was successful in performing a ‘pee break.’

When we started our campaign, my wife sent me a song because I was going through a particularly challenging time of my life. I was clinging to anything that would give me hope. It was at that time I first heard our anthem – When We Love. It took no time to realize, this was the song that we needed to use for our campaign. The words, and music, continue to inspire me to this day. If you have not heard it yet, check out our fundraising page and listen. For some reason, notes can portray the feelings of the heart far better than words.

So what can you do? First of all, thank you for reading and thank you for listening to our message. If you would like to do more, please visit our fundraising page. Donate whatever you would like.

When we love someone, anything is possible.

-Stephen

 

To support the Clossons and donate, please click here.

You can also follow their journey on their blog here.

___________

Virginie and Stephen Closson are taking on the Sinister 7 Ultra in July, in honor of all those affected by neuromuscular disorders. Their theme for this challenge is, when we love someone. Muscular dystrophy is something close to both of their hearts. Virginie’s two brothers had Duchenne muscular dystrophy, and her nephews are also affected. The Clossons hope to inspire others, while raising funds and awareness to support those affected by neuromuscular disorders.  

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Dr. George Karpati

DrKpuzzleDr. George Karpati was one of Canada’s pre-eminent researchers in the field of muscular dystrophy. Dr. Karpati was recognized internationally as one of the leading experts on the diagnosis and treatment of neuromuscular disorders, including muscular dystrophy.  He was among the first to recognize the importance of dystrophin in Duchenne muscular dystrophy (DMD), and its absence in the muscles of those with the disease.

Born in Hungary, Dr. Karpati was a Holocaust survivor who emigrated to Canada in 1957.  He received an M.D. from Dalhousie University in 1960 and spent 30 years in clinical practice, research and teaching in neurology at the Montreal Neurological Institute.  He was the Izaak Killam Chair and Professor of Neurology and Neurosurgery at McGill University.

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Your Stories: Doug Torrance

This shot is of the late Bill Kincaid, one of the major movers behind getting air time for the Telethon and making sure it kept on the air for over three decades.  He and his wife Maureen (mentioned in earlier picture...) were part of the original team behind the Telethon and stayed with it for so many years.

This shot is of the late Bill Kincaid, one of the major movers behind getting air time for the Telethon and making sure it kept on the air for over three decades. He and his wife Maureen (mentioned in earlier picture…) were part of the original team behind the Telethon and stayed with it for so many years.

So many memories of my years of involvement with MDAC… over 32 year’s worth!  Most of my memories are too lengthy to share here, because they do scan over three decades of my involvement with the Ottawa portion of the annual Jerry Lewis MD Labour Day Telethon.  I began as a volunteer around 1973 as a ‘runner’ and odd job guy at the Landsdowne Park location of the Telethon that year.

We then moved to the Skyline Hotel and were there for over 21 years.   My most vivid memories are the research breakthroughs, meeting the clients and families, and moving in to the Skyline Hotel on the Thursday night of Labour Day weekend, and crawling out on Monday night after ‘tear down!’   People like Ken ‘The General’ Grant, Ian Gent, Cpt. Tom McCormick and his wife Carey, Bill and Maureen Kincaid and more, are all still like family to me.  Seeing the excited faces on kids bringing in their hard earned donations at backyard ‘Carnivals for MD,’ receiving cheques from service clubs, and seeing the ‘Tote Board’ totals slowly crawl up are all still vivid in my mind.

This shot shows Maureen Kinkaid O.B.E. with a telethon volunteer.   Maureen, along with her late husband Bill, were instrumental in getting the Telethon going in the early years, and they both served for over 25 years as co-chairman.   Maureen handing things over to me for the last four or five Telethons in Ottawa.

This shot shows Maureen Kinkaid O.B.E. with a telethon volunteer. Maureen, along with her late husband Bill, were instrumental in getting the Telethon going in the early years, and they both served for over 25 years as co-chairman. Maureen handing things over to me for the last four or five Telethons in Ottawa.

I have a pile of old VHS tapes, covering many years of the Ottawa portion of the Telethon, as well as a huge chunk of the Jerry Lewis portion from Los Angeles, Las Vegas etc.  They are, unfortunately, still in the old VHS format.  I would cart my VCR down with me to the hotel, plug it in at the beginning of the Telethon, and try to remember to change tapes every six hours or so!

I ended my involvement as local Telethon Chair after my wife and I were transferred to Saskatchewan.  I still maintain some contact with the Ottawa crew, and am amazed and encouraged with recent research, diagnosis and treatment breakthroughs!  Thank you MDC for letting me serve… and keep up the fight!

Doug Torrance – Wellington, ON

 

 

It is a picture of 700 plus volunteers at our 'Love In' at the former Skyline Hotel in Ottawa around 1974.  We would traditionally have this 'pep rally' with all the volunteers a week or so ahead of the Labour Day Telethon to make sure we were all on the same page... lots of fun, food and fellowship!

It is a picture of 700 plus volunteers at our ‘Love In’ at
the former Skyline Hotel in Ottawa around 1974. We would traditionally have this ‘pep rally’ with all the volunteers a week or so ahead of the Labour Day Telethon to make sure we were all on the same page… lots of fun, food and fellowship!

 

This first shot shows from Left to Right, The Late Bill Kinkaid, long time host and co-chairman of the Ottawa Telethon, Captain Tom McCormack, long time Telethon Chairman, and Ken 'The General' Grant formerly of CFRA in Ottawa, original and long standing Host of the Telethon in Ottawa.

This first shot shows from Left to Right, The Late Bill Kinkaid, long time host and co-chairman of the Ottawa Telethon, Captain Tom McCormack, long time Telethon Chairman, and Ken ‘The General’ Grant formerly of CFRA in Ottawa, original and long standing Host of the Telethon in Ottawa.

 

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Through my eyes…

June BlogThere are many times, especially when I meet new individuals or even when I am having coffee with my closest friend, that I find myself searching for answers. How am I going to explain this? It’s one of the hardest questions I need to answer, and to this day my answers are always difficult to produce.

When you sit back and you have time to reflect, you may think about your life. This one life you have. You think about why this battle chose you and how every single day for the rest of your life, you’re going to be fighting. That’s hard to accept, it’s one of the hardest things to accept. So let me try and explain to you, the best way I know how, what this battle really is.

Slowly, I was starting to notice differences as I was getting older.  A feeling in the pit of my stomach; something was missing and I might never be able to replace it. Something was happening and nobody could tell me what. A code that nobody seemed to be able to crack. Then there are the thoughts of what am I going to tell you? What happens when I tell you who I am? Would you turn your back on me?

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My First Walk for Muscular Dystrophy

My sister, me, and two of my co-workers

My sister, me, and two of my co-workers

On the third of May, I experienced my first Walk for Muscular Dystrophy! I was excited to finally attend one of the events that my colleagues had been working so hard on. My sister and I volunteered to help with registration at the Toronto, Ontario Walk4MD, along with some of my coworkers and other friendly volunteers.

We arrived bright and early to Cherry Beach Park, a lovely spot along the downtown waterfront. We went over our jobs for the day, then sat down and waited for the participants to arrive. Though it was a cold day, we gave smiles and received them right back from each person who came to the registration desk!

It was great to see how many people came out – those who come 14305684313_c9ed6250f7_zyear after year, and the many first timers like me! Something new to this Walk was the tea and coffee tent, where people gathered and were able to interact over a nice hot drink.

I was inspired to hear the Master of Ceremonies Christina Massad speak, along with the Toronto Walk Ambassador Warren Jones, and Honorary Chairperson of the Toronto Walk, Anthony Farnell. I was hoping that having Anthony – who is the Chief Meteorologist  at Global News – and Storm the Weather Dog at the Walk would keep the rain away.. but it rained anyways. The good thing was that the rain didn’t last very long! (more…)

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