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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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Creating Accessibility

disabled-1274655_960_720Accessibility is a huge issue around the world, even for Canada. A survey conducted by the Angus Reid Institute, in partnership with the Rick Hansen Foundation states that:

“Canadians identified massive gaps between current and ideal levels of accessibility within their communities, with the biggest barriers being access to recreational opportunities, transportation around the community and access to private businesses.” (Angus Reid Institute and Rick Hansen Foundation, 2015)

guide-dogs-at-dogPACER Ideally when new buildings are built they should be following building codes, and accessibility guidelines, but sometimes details are forgotten or incomplete. Making sure new buildings are ready to welcome all patrons, as well as retrofitting older infrastructure can make a huge difference in our communities. Other times, creating accessibility is as easy as offering to read a menu at a restaurant, or making sure walk-ways are clear. The Government of Canada is currently listening closely to accessibility needs as they consult the public for the Canadian Disabilities Act, and along with the provinces and territories have laws that make sure accessibility is a priority for our communities.

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Buck 4 Luck 2017 – Where to Donate

B4L-smallLooking to sign your name to a shamrock? Here is the list of where you can give a Buck 4 Luck and help make muscles move!

Make sure to share a photo of your shamrock with us on social media by using the hashtag #Buck4Luck and #shamrockselfie!

 

British Columbia - contact Ethan Clow, ethan.clow@muscle.ca 1-800-366-8166 ext 2106

Jolly Coachman Pub, Pitt Meadows

The Gillnetter Pub, Port Coquitlam

Doggy Six Grooming, Richmond

 

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Gift of Hope

gift-of-hopeWhen our son, Ethen, was diagnosed with Duchenne muscular dystrophy, we were suddenly faced with lots of questions: Who could help us? Who understood what we were going through?

Our family doctor recommended that we call Muscular Dystrophy Canada. We did, and since becoming clients, we have found Muscular Dystrophy Canada to be kind, helpful and always there for us!

How has Muscular Dystrophy Canada helped us? They have been an integral part of every parent–school meeting, providing teachers and students with important facts about muscular dystrophy. They also were there to explain the government assistance forms and help with the application process.

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Ontario Leadership Conference Highlights

on-confOn Saturday, November 5, 2016, Muscular Dystrophy Canada hosted its’ Bi-Annual Ontario Volunteer Leadership Conference at the Holiday Inn Toronto International Airport. This one-day educational and informative conference featured various speakers and presentations that were both motivating and inspiring.

Buzz Green, Chair of the Board, welcomed everyone and introduced CEO, Barbara Stead-Coyle, who presented an organizational overview and talked about the strategic plan for the next three years. Services staff highlighted how donor dollars are used to provide services to those affected by neuromuscular disorders and how we help to enhance the lives of those affected. (more…)

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