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Taking Care of Caregivers

retreat-resizeLast fall, Muscular Dystrophy Canada welcomed participants to its first Atlantic Caregivers Retreat weekends in Nova Scotia and New Brunswick.

The Caregiver Retreat Weekends gave attendees a respite in a supportive and restorative environment where they could rest, relax, learn, and share their caregiving experience with their peers.  It gave them an opportunity to support each other and share experiences as parents and caregivers of loved ones affected by a neuromuscular disorder.

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How I See It: Good > Bad

IvanaI thought life was going to be so easy. I thought I had it all figured out. Get a job, get married, have a family, and die happy. Life’s journey sure has crushed that simple concept.

I am 27 years old and have experienced more than I ever asked for – good and bad. Most people couldn’t even fathom what I have gone through. I have watched my entire world collapse before my eyes with no power to stop it. I have seen everything turn into darkness. I have had my heart ripped open and every existence lost into infinite.

I have learned to cross too many lines drawn in front of me. I have fallen headfirst; I have felt the edge of the world on my bare feet.

These eyes have seen too much, these ears have heard much more. My heart has grown stronger, my mind smarter. All the times I have fallen on my knees, all the times I have begged, I thought life might never be worth it all.

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How I See It: Hello 2017

hello-20172016 was a year full of lessons for me. I spent most of the year trying to figure out who I was, where I wanted to go, and questioning what I was doing with this life. It was the first full year I spent away from my family. There were many nights spent staying awake, questioning every decision that lead me here.

It was a very difficult year – probably the most difficult I have ever experienced. It was both mentally and physically draining. It got to a point where I wasn’t sure what I was going to do, and how I was going to go on. Months would pass by where I didn’t write a single word, and I just didn’t have the energy or motivation to do it. I stopped reading; I let my hobbies fade away. I complained about everything, and I found myself showing hatred more than kindness. Sometimes we hit a brick wall, and I think 2016 was the year I finally hit mine.

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What is the National Fire Fighter Relations Committee?

nffrcThe National Fire Fighter Relations Committee (NFFRC) is an advisory committee to the Board of Directors of Muscular Dystrophy Canada.

The committee is comprised of up to twelve voting members who represent the fire service across Canada. Members of the committee are chosen on a provincial basis to represent the Fire Fighters in that province on the NFFRC.

The chair of the NFFRC is automatically given a seat on the Board of Directors where there are, currently, three additional directors who serve, or have served, in the fire service. This demonstrates the value that Muscular Dystrophy Canada places in the support received from Fire Fighters since 1954.

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Fabulous Fundraising: How One Team Raised $72,000

 

erinkenstoryFourteen-year-old Erin Novakowski is a typical teenaged girl who really loves Starbucks, her phone and shopping. She also happens to have a form of muscular dystrophy called spinal muscular atrophy (SMA) type II.

“Although I never let my disability stop me from doing the things I love, I use lots of assistive equipment to help me throughout the day,” she explains. “And sure, people stare at me, but I just like to think it’s because I’m fabulous and they want to know where I got my pants.”

Erin’s infectious enthusiasm for life is one of the things that her friend Nicole loves about her. “She’s the girl who knows how to make the best out of any situation,” she says. And while Erin and Nicole’s relationship began because Nicole works part-time as Erin’s care aid, their bond has deepened well past the usual hallmarks of friendship, leaving the two of them feeling like sisters.

 

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