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Mom and employee feels emotional impact of Walk for Muscular Dystrophy

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In June 2007, as Muscular Dystrophy Canada’s Alberta Chapter Advisor, I had the privilege of attending Muscular Dystrophy Canada’s National Chapter Conference.  Meeting people who were as passionate as I about our mission was wonderful, but learning about the plan to roll out the Walk for Muscular Dystrophy as our national signature event in 2008 left me breathless and filled with hope and excitement.  Watching video of the Halifax Walk for Muscular Dystrophy and hearing about the success of these events in Eastern Canada made me antsy to get home and start planning for Alberta to be on the map with the Walk for MD!  I remember sitting around socializing on the Saturday evening with volunteers and Fire Fighters from all over Canada, and saying to my Alberta gang – “We HAVE to make this happen in Alberta next year – Edmonton for sure!” and agreement all around that we were committed.  In 2007, Lethbridge Chapter President, Jackie Simpson, went home and made a September Walk for MD happen, raising about $1500.  Alberta Walks for MD had begun!

In early 2008 a small committee comprised of Deb Cumming, Rachelle McGonigal, Karin Harrison and myself met for the first time and began plans for a June Walk for Muscular Dystrophy in Edmonton.  Soon after, Christie Tobia also joined our group.  We had full support of both Edmonton and Strathcona County Fire Fighters and we were enthusiastic and ready to make our event the biggest success it could be – and successful it was, raising over $35,000 that first year!

The Walk for Muscular Dystrophy is more than just a fundraising event.  For me, the Walk for MD represents hope and community.  At the time I took part in launching the Walk for Muscular Dystrophy in Western Canada I was first and foremost Ben’s Momma.  Ben, then just turning 11 years old, was still not fully diagnosed, and we were in the midst of many tests and visits to medical professionals to try to pinpoint closer just what was going on for him.  In April 2008, with Muscular Dystrophy Canada’s support, we traveled to Ontario to see a specialist in Mitochondrial disorders, who performed another muscle biopsy and examination.  In June, just one week before the first Edmonton Walk for Muscular Dystrophy, we received Ben’s official diagnosis of Mitochondrial Myopathy.  These two events are forever linked in my mind.  Now Big Ben’s Bandits were not only working to raise awareness about neuromuscular disorders in general because our Ben’s nemesis had a real name and as a family we were even more determined to fight it and help him to dream big and live his best life.

I have been at all but four Walk for Muscular Dystrophy events in Alberta, first as a volunteer and then beginning in 2010 as Alberta’s Fundraising and Community Development Coordinator.  I have worked closely with every Walk for Muscular Dystrophy lead and committee in Alberta – encouraging, trusting, and celebrating the growth of the Walks for MD.  At each and every event we meet new families who are as passionate as we are to help their loved one be independent, healthy and happy.  Sometimes, these families are struggling to accept a new diagnosis, and I can’t help but remember the day I took the phone call about my own son’s diagnosis just a week before our first Edmonton Walk for Muscular Dystrophy and how much comfort we found in our Chapter community and Walk for MD that year (and since) with the knowledge that we are not alone on this journey.

In Alberta we now walk for muscular dystrophy with the generous support of Canada Safeway, and of course our Fire Fighters, in eight communities right across our province.  In 2007, Alberta raised $1500 at the Walk for Muscular Dystrophy and heightened awareness in one small city.  In 2011, Alberta raised nearly $160,000 and priceless awareness across our province – an incredible team effort that continues to grow!   There are so many amazing reasons to celebrate at our fifth anniversary of the Walk for Muscular Dystrophy, here in Alberta and right across our great country!

Author: Terri Tumack began work as Alberta’s Fundraising and Community Development Coordinator in late 2009. 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 her passion since the early days of her involvement with the organization.

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