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Archive: July, 2014

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Woven With Hope

Our journey is woven (and stitched!!) with hope!

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Hope can mean many things to many people.  I have had hope on my mind quite a bit lately, for all kinds of reasons. I have watched friends who are struggling with loss and change – racing against time, and I have been struggling with

these things myself.  I have been thinking about hope and our ownfamily’s journey with Ben’s neuromuscular disorder, especially as he is nearing adulthood and it is really time for us to step back and let him make decisions for himself.  It isn’t easy, but then, I don’t think it ever is when children grow up.

When Ben was diagnosed with non-specific congenital myopathy 16 years ago we were not hoping for a cure. We were still hoping for a specific diagnosis.  For a time, 10 years later, when he was finally diagnosed with Mitochondrial Myopathy, we had cures on our mind.  But pretty early on, even before the Mito diagnosis, we realized that what we were really hoping for was for Ben to be happy and independent, just like we hoped for his sister and brother.

There are a few things, en route to figuring out how to help this little human be happy and independent, that I’ve learned about hope and what kinds of things symbolize hope for me.

-        - Fear eats hope for breakfast, lunch and supper – if you let it.  Fear can stop us faster than any physical or cognitive challenge ever could. Ask me how many people I know personally who are

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doing things people were sure they never would, in spite of the challenges in front of them?

-         - Wheels (on chairs, and sometimes on chairs with motors), tubes for eating and/or breathing, catheters, handfuls of pills, canes, braces (on teeth or on legs), motorized beds, commodes on the toilet/in the shower, lifts on the stairs and into vehicles and bathtubs, eye glasses, service dogs, and all of the other Assistive Devices (and people or animals!) that I haven’t listed symbolize HOPE in the form of mobility and freedom.  They offer the person who’s body has it’s own agenda the opportunity to pursue and realize their personal dreams and goals.

 

-         - Hope for a cure equates to hope for more time.  More time to walk, more time to play, more time to experience all of the incredible things this world has to offer us, more time with the people we love.

-        - Everyone yearns to know that there is a purpose in their life and that they have value.  We can give our children hope by helping them find things they are passionate about and to realize that there is great value in many pursuits beyond the physical. People have a way of surprising us with the things they CAN do when we don’t tell them they can’t.

-        - There is hope in ACCEPTANCE.  Acceptance does not mean that you have given up, it means that you have acknowledged what is.  “At what point do you give up – decide enough is enough?  There is only one answer really.  Never.”  Never, never, never give up on finding a wayto make dreams a reality and live a wonderful life AND be able to see the good and wonderful in your life.

-        - Strong role models provide hope– look for them, and listen to their message. Their goals need not be your goals, but through their examples doors open.  Being connected to groups like Muscular Dystrophy Canada and Wheelchair Basketball Canada has opened our family’s minds and created opportunity where we once thought we saw none.  We know now, that no matter how Ben’s Mito progresses, he will be able to love, have dreams (keep creating new dreams!), and have strong purpose in his life.

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 Terri Tumack recently resigned her position with Muscular Dystrophy Canada as Alberta’s Fundraising and Community Development Coordinator after 4 years. She has been an active volunteer with Muscular Dystrophy Canada since 1998 when her son Ben was first diagnosed with a non-specific neuromuscular disorder.  Working to build the Muscular Dystrophy Canada community in Edmonton, and later across Alberta as Chapter Advisor, has been, and continues to be, her passion since the early days of her involvement with the organization.

 

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Chantal Germain

Chantal at the Telethon

Chantal at the Telethon

My adventure at MDC!

At first, I just wanted to do a little fundraising to help my idol, Michel Louvain, reach the fundraising goal of the Telethon for Muscular Dystrophy, but then I met some youth affected with the disease: Patrick, Mylène, Nancy, and Éric. It was then that I decided to pour all my energy into fundraising. I had only one goal in mind,“Raise more funds so I can help give these young people a better future!”

Sometimes it’s been at the expense of my health, but volunteering for Muscular Dystrophy Canada has made me rich! Not financially, but I became a millionaire in terms of the love I get

Chantal and Michel

Chantal and Michel

from this warm and rich group of friends that I still see from time to time. I think about Normay, Lise Lebel, Hélène, Manon and Michel Louvain, with whom I’ve developed a close friendship!

Thank you Muscular Dystrophy Canada!!! Yes, I did volunteer valuable time, but I also made countless memories that I’ll cherish forever…

Please volunteer! It feels really good!!!

Together, where there’s a will, there’s a way! I’ll always believe it!

- Chantal  Germain

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Chantal Germain became involved with the Jerry Lewis Labour Day Telethon in Montréal, Québec in 1984. She had already begun fundraising for Muscular Dystrophy Canada a year before. In 1993 Chantal raised $100,000 – a record at the time. By the time the last Montréal Telethon aired in 1996, Chantal had contributed over $500,000 total to the fundraising efforts. 

Mise au jeu lors d'une activité de levée de fonds Campagne 1990

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The Walk for Muscular Dystrophy Season So Far

CAROUSEL_JULY_WALKIt’s time to give you an update on the Walk4MD season so far! 2014 has proven to be a great year for the Walk, with 60 events taking place across the country, and we aren’t done yet, but here we have updates from British Columbia, Manitoba, Ontario and Québec.

British Columbia: The Safeway Walk for Muscular Dystrophy season has been a huge success so far in BC! Since May, we’ve had walks in the North and South Okanagan, Vancouver Island, and the Lower Mainland. We’ve had record attendance at many of the Walks with more people coming out  than ever before to support people with neuromuscular disorders in their communities. With two more Walks to go in September, we are excited to meet more people and raise more funds! – Jeannine

Manitoba: Manitoba’s two walks are set for September in Brandon and Winnipeg.  Our Ambassadors are excited to see people starting to register and raise funds and hope the momentum continues through the summer.  They are hoping to see sunny skies and lots of smiles on event day.  -Kristen

Ontario: The 2014 Ontario Walk for Muscular Dystrophy events have been a huge success! With events almost every weekend in May and June, it has been a busy summer, but definitely the best and most successful Walk season yet. This year, old friends retuned, and many new faces joined our community of hope to help raise funds and awareness of neuromuscular disorders. We’ve had visits from our local heroes, the fire fighters (including some visits from Sparky the fire dog himself!), the opportunity to socialize and meet new people, fun activities and memories that will last a lifetime. With only the Sault Ste. Marie Walk for Muscular Dystrophy left to take place in Ontario, the season is almost over and we can’t wait to start planning for next year. We look forward to seeing you there!  -Stephanie

Québec: Au Québec, les marches du printemps se sont déroulées sous le signe du soleil et de la bonne humeur! En effet, les quatre marches du printemps ont toutes eu lieu lors de magnifiques journées ensoleillées. Elles ont permis d’amasser près de 120 000 $ et de réunir 600 personnes!!!  Il y avait au menu, une chorale d’enfants, un candidat de La Voix qui nous a généreusement offert ses chansons, des clowns, des maquilleuses, un photobooth, des structures gonflables, des animateurs divertissants, des portes-paroles dévoués, de merveilleux ambassadeurs aussi inspirants les uns que les autres et des dizaines de vaillants bénévoles. Années après années, plusieurs familles s’y donnent rendez-vous et c’est pour elles l’occasion de retrouvailles et d’échanges!   – Marie-Hélène

 

 

 

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54 Years of Fill the Boot in Sudbury – Capreol

50th Annual M D Boot Drive Brian and ShayneThis year marks the 54th Fill the Boot drive for the Sudbury-Capreol Fire Department. We had the chance to speak with Alex Nepitt who has been in charge of this Boot Drive for over three decades. Over such a long time, keeping the Department’s interest and excitement up year after year seems challenging, but Alex attributes this dedication to the fact that lots of the Fire Fighters have kids of their own. “It’s easy because of that. To relate your own child being diagnosed with a neuromuscular disorder, and that gives us  extra motivation to solve the puzzle that is muscular dystrophy.”

Alex has been a Fire Fighter in Capreol for 32 years, and has held the role of Muscular Dystrophy Canada Fire Fighter Advisor since. But what is the story of the Department getting involved with Muscular Dystrophy Canada?

AlexMDBootDrive09“We joined the Muscular Dystrophy Association of Canada in September 1960 but due to Hunting Season, Moose Season, and a very early and cold winter with lots of snow, the Capreol Firefighters Club did not do a Boot Drive that year. They collected $10.00 from all 25 firefighters and sent in $250 in January 1961. So that’s how we’ve arrive at our 54th instead of 55th Fill the Boot this year.”

“I added up the money from the Capreol Firefighters minutes of meetings from 1960 until 2013. The minutes are also how I found out about the  exact date we started. The total up to September 2013 is $120,046.04.”

AlexBetsyAlex and the other Capreol Fire Fighters make a point of making sure that every cent raised during the Fill the Boot goes directly to MDC – all meals and materials are paid for through other ventures. “The Capreol Firefighters Club paid for vinyl banners by hosting an open house and car wash every June,” says Alex. “With the money from these extra fundraisers we have also been able to put a sticker in our local paper thanking the citizens of Capreol after our 52nd Boot Drive. Also, we have had a tradition since the first Fill the Boot where the Club treats the Fire Fighters and their spouses who work on the drive out for supper.”

So how does Alex go about planning for the big day?

AlexScotty51BootDrive“Planning for the drive is easy because I have done it 31 times, so it comes naturally. I put up a schedule in July for the Boot Drive that takes place in September. Working this far ahead gives our guys time to plan other things and still make the Drive. The earlier the better,” Alex remarks. “Our Drive is 12 hours total, and lots of our guys work 6 to 12 hours. In recent years it has become harder to get guys to work, but I think this is simply a sign of our times. In the old days we would get 23 or 24 guys out of the 25 in the Department. I remember a couple of years when we had all 25 guys. Now, last year we had 9 out of a possible 16 which means each guy has to work more hours to cover for the rest of the guys.”

52AnnualMDBootDrive2012But the hard work of the Fire Fighters and the people of Sudbury – Capreol has defiantly paid off:

“There are people who hunt us down just to put money in the Boot every year. Some people I know have donated over 40 years and counting. People have told us they remember going with their parents to put money in the Boot when they were kids.”

Alex and his fellow volunteers will be out in Sudbury-Capreol collecting for their 54th Fill the Boot September 5th and 6th.

Thank you to the Fire Fighters and citizens of Sudbury-Capreol for helping make muscles move for 54 years!

 

 

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Bringing Awareness to School

OwenOn May 1st, Ryerson Public School in London, Ontario held a “Mini We-Day.” Organizations in the community were invited to speak to students about how they are making a difference in the community and in broader ways. Owen McGonigal, who is affected by muscular dystrophy is in grade 4 at Ryerson and suggested Muscular Dystrophy Canada be involved.

Throughout the morning groups of students rotated through, learning about what muscular dystrophy is, what the Muscular Dystrophy Canada community does and about the support we receive from Fire Fighters. Owen assisted with many of the presentations and shared about his life living with muscular dystrophy, his experiences attending Fire Fighter events and fundraising for the Walk for Muscular Dystrophy. The students thought it was really neat that Owen is on the stickers and posters used for Fire Fighter events.

In the afternoon, London Fire Fighters arrived for a Fill the Boot event at the school. Students in Kindergarten through Grade 3 came outside to visit with the Fire Fighters, tour the truck and make a donation if they wanted to. At the end of the day, $477.70 was raised!

Thank you Ryerson Public School and London Fire Fighters for a great day in support of Muscular Dystrophy Canada.

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