Fire Fighters have been volunteers with us since November 1954 when the first fundraising campaign occurred in Toronto, Ontario. Today, over 550 Fire Departments are involved, and Dustin LePage is one of the many Muscular Dystrophy Chair people across Canada.
This year marks Dustin's first full year as the MD Chairperson for the Robson Volunteer Fire Department in British Columbia, and Dustin and the Department have already planned out many exciting events, and held a successful Fill the Boot campaign! We wanted to get the inside scoop on what it's like to be the MD Chairperson, so we asked Dustin some questions!
Tell me about your family connection to muscular dystrophy.
or ten, and I was pushing him in his manual chair down a gravel driveway. Well, the front wheels dug into the gravel and he flew out landing on his face, bloodied and all. I was crying and he just looked up at me, awkwardly because he was crumpled and bloodied on the ground, and said, "Quit crying you baby and just pick me up!" He NEVER complained and instead was a very upbeat and positive person. Anyone that knows me today would say that I have those same attributes, and while I know there are many factors that shape us into the type of person we are, I'm 100 per cent certain that I owe those attributes in myself – to a large degree – because of my association with Troy. Even though he passed in 1997 at the way-to-young age of 24, to this day he positively affects my life by making me not sweat the small stuff and being grateful towards life in general. After all, if he never complained about his circumstances, how the heck could I even complain or not be grateful for mine?
Georgia and her sister Charlotte.
Since our children have been diagnosed with Spinal Muscular Atrophy (SMA), our awareness regarding people with neuromuscular conditions has skyrocketed. We are starting to recognize that although there is no current cure for many of these conditions (including both SMA and other forms of muscular dystrophy); walks such as these not only increase support for these specific conditions, but also increase societal awareness for the daily difficulties that must be overcome for both the people living with the condition, and their caregivers. There is a current goal by our government to make Saskatchewan the most livable province in the country for people with disabilities, and having walks such as these continue to support this endeavour.
Everyone feels at least some things in their life are out of their control, but when Georgia was diagnosed with SMA we felt that almost ALL things were out of our control. We were afraid and helpless, and didn't know what to do. But the tide is turning. We are no longer asking the 'why us' question, but rather the 'what next' question. And that is where walks like this are so vital. It is time to look at today, tomorrow, and beyond. How can we support those with neuromuscular conditions today, and cure the conditions tomorrow and beyond? Public knowledge and support into these devastating conditions WILL lead to tangible changes.
Among the many sessions, workshops, and panels at Empowerment In Action are many inspiring and knowledgeable people who are looking forward to sharing and connecting with attendees. Maayan Ziv is one such speaker. She will be participating in the 'Living Life to the Fullest' panel. Maayan is an accomplished photographer, recipient of a Queen's Diamond Jubilee medal, and is looking forward to traveling to Vancouver, BC to share experiences.