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The Parent-of-Origin Phenomena in Congenital Muscular Dystrophy

CMD-resizeMuscular Dystrophy Canada is passionate about finding treatments and improving the quality of life for Canadians affected by over 150 different types of neuromuscular disorders. In order to do this, we have been dedicated to funding biomedical and discovery research to increase our understanding about these genetic disorders. Research has been successful at uncovering the causes and mechanisms behind several neuromuscular disorders, like Duchenne muscular dystrophy, there are still many unanswered questions with other conditions, like myotonic dystrophy.

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#Walk4MD 10 years of FUN-raising and support: Team Alex

TeamAlex-2016-resize

The Walk for Muscular Dystrophy season is upon us and we’re thrilled to be celebrating our 10th anniversary of our signature event nationwide.  So it’s time to get on those computers and sign up to walk, wheel or roll at your local #Walk4MD event!

The #Walk4MD is a celebration and fundraising event in support of Canadian individuals and families affected by neuromuscular disorders. This fully accessible event takes place in 50 locations across Canada, and includes activities for kids, snacks, refreshments prizes and our beloved Fire Fighters.

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Fire Fighters brave the elements for MD

Guelph Rooftop Campout 2016

Guelph Rooftop Campout 2016

Amongst the numerous ways Fire Fighters support Muscular Dystrophy Canada the Rooftop Campouts has become a very popular winter fundraising event.  It’s been over a decade since Rooftop Campouts were introduced in Alberta as another way for Fire Fighters, who have partnered with us since 1954, to challenge their communities to raise awareness and funds for Muscular Dystrophy Canada.  Rooftop Campouts have expanded nationwide and you can find one in every province throughout Canada.  Fire Fighter participants will endure below freezing temperatures, or opt for blistering summer heat, inclement weather, and whatever else nature throws their way during multi-day Rooftop Campouts.

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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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Reflections on Rare Disease Day 2017

rdd-logo-300x287Today, February 28, 2017 is International Rare Disease Day (RDD). While it is just one day on the calendar, people affected by rare diseases are impacted by their condition 24 hours, 7 days a week, 365 days a year.

A rare disease is defined as a medical condition that impacts a small percentage of the population, less than 1 in 2000 people.

• 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
• 50% of rare diseases affect children.

Muscular Dystrophy Canada supports research to find treatments for over 150 different types of rare neuromuscular disorders. You see, muscular dystrophy isn’t just one disorder; Different genetic mutations cause different disorders. While investments in research over the past decade have resulted in a tremendous increase in our knowledge, and understanding of the molecular causes of neuromuscular disorders, we still have a long way to go.

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