Archive: February, 2012


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Top 3 Reasons You Should Complete the LINC Study

Have you participated in the LINC Study yet?  The LINC Study is a national study to learn about people living with a neurological condition and how it impacts their everyday lives. The study needs respondents who live in Canada and who are 17 or older and live with a neurological condition OR are a parent of a child (5-16 years) with a neurological condition.  It has 3 parts:

1. A snapshot in time: an in-depth survey of 3500 people living in Canada

2. A year in the life of 350 Canadians: a series of monthly conversations

3. Individual stories: a study of 18 people, their families and supporters

Top Reasons to Complete the Study:

1)      Be Heard!

The LINC study is the first opportunity for people with neurological conditions to share the impact it has on their daily lives, and offers a chance to have your voice heard!  (So far, respondents have mostly been people with brain injuries, so the study really needs the participation of people with neurological disorders.)

2)      Be an Influencer!

The results will be very important in terms of influencing government policy—there is currently no data on the real economic burden of living with neurological disorders.

3)        Be Helpful!

The study may feel long, but it’s very important to finish it or the data can’t be used. The research could lead to any number of advancements and you could be helping the next generation by donating your time.  You can pause the study and resume where you left off throughout.  Start today and remember to encourage others who are eligible to join the LINC Study as well.

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Trek, Bike, and Mountain Climb all over the world in aid of Muscular Dystrophy Canada!

Muscular Dystrophy Canada has recently partnered with Charity Challenge, the world’s leading fundraising challenge operator, as they launch a new series of their most popular adventure challenges  around the world for Canadians to participate in while raising money for Canadian charities. Visit new countries, experience different cultures, and improve your fitness while raising funds for Muscular Dystrophy Canada.  There are over 100 challenges to choose from including trekking the Great Wall of China, Inca Trail, Everest base camp, or the summit of Mt. Kilimanjaro.

These challenges offer the chance to meet new people, experience new cultures and see wonderful landscapes throughout the world.  The challenges also aim to create an understanding of local issues and provide sensitive interaction with the local communities.  Participants can be women and men, young and old.   Motives come in all different forms, but the one thing everyone has in common is the desire to help a worthwhile cause while breaking the mold of everyday routine.

These challenges are more than just a matter of physical exertion.  The goal ahead is as much about fundraising as getting fit and pushing yourself to new limits.  By participating in a charity challenge expedition, you are pledging to raise as much sponsorship as possible for Muscular Dystrophy Canada.

Many people find this aspect of the challenge daunting, but by being original and planning ahead, the fundraising can be as rewarding and enjoyable as the expedition itself.  Muscular Dystrophy Canada will give you a head start after you register by providing you with ideas and advice, and online and offline sponsorship forms.  Most of all we will make sure that you have fun collecting your sponsorship.  It doesn’t have to be a struggle.

Mercedes Ordono is a Revenue Development Coordinator for Ontario & Nunavut and works in Muscular Dystrophy Canada’s Toronto office.  To learn more about Charity Challenge, she can be reached at 416-488-0030 ext. 152 or by email at mercedes.ordono(at)muscle(dot)ca.

Fire Fighter discusses Rooftop Campouts on CTV Edmonton

Amongst the various and numerous ways Fire Fighters support Muscular Dystrophy Canada the Rooftop Campouts are rapidly becoming a popular winter fundraising event.  Seven years ago 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 since expanded to various cities throughout Canada.  Fire Fighter participants from these areas will endure below freezing temperatures, inclement weather, and whatever else nature throws their way during multi-day Rooftop Campouts.

From February 21st to 24th, five Fire Fighter groups in Alberta will campout.  These events will be held in Edmonton, Strathcona, Leduc, St. Albert and Spruce Grove.  Paul McGonigal, a long-time supporter and inaugural Rooftop Campout planner from Edmonton appeared on CTV Morning Live on CTV Edmonton to speak about the Rooftop Campouts.  Paul was joined by Chase, a young boy with muscular dystrophy.  Watch the video:

Fire Fighter Paul McGonigal on CTV Edmonton

Rooftop Campouts will also be held in Prince George, BC (March 10-11); Winnipeg, MB (March 13-16); London, ON (March 15-18); Medicine Hat, AB (March 16-17); Fort McMurray, AB (March 28-31); Brandon, MB and Saskatoon, SK.  You can support these Fire Fighters by joining the Rooftop Campout Facebook page or by visiting and donating during the event!

5 Reasons to Attend Youth in Action 2012: Youth Conference in Calgary this August

Youth in Action 2012

Muscular Dystrophy Canada and sponsor Canada Safeway are extremely excited to be planning Youth In Action (YIA) 2012.  YIA is a National Youth Conference which will be held August 24-26, 2012 in Calgary, Alberta.  Participants spend an action-packed weekend with youth and families affected by neuromuscular disorders, participating in interactive workshops, hearing from inspirational speakers, and enjoying social evenings with lots of great entertainment.  There are dozens of reasons to join in this amazing event, but here are the top five:

1)      Make new friends and see the old!

YIA is geared toward 15-24 year olds but everyone is welcome, including health and service professionals, clients, family members and caregivers.  You can make friends from across the country by sharing fun bonding experiences. And this is the third Youth Conference that Muscular Dystrophy Canada has hosted so it’s a great chance to reconnect with friends you’ve made in past years!

2)      Entertainment every night!

YIA is held on a weekend so you know having fun is on the agenda for Friday and Saturday night!  Details are still being arranged, but it’s official that Saturday night’s entertainment will include a performance by one of Muscular Dystrophy Canada’s own ambassadors—Luca “Lazylegz” Patuelli!

3)      Travel Grants are available!

Conference fees cover workshops, activities and five meals, and cost $80 for youth (plus one family member/caregiver).  But travel and hotel can be expensive—especially if you’re travelling cross-country—this is where Canada Safeway Travel Grants come in handy! Grants can cover airfare or mileage plus two nights of hotel accommodation.  To be eligible for this funding, you must have a neuromuscular disorder, be between the ages of 15-24 and be a registered client of Muscular Dystrophy Canada.  Registering with Muscular Dystrophy Canada is FREE and applying for travel grants is as easy as creating a video or writing a short essay!

4)      You can be heard!

You’ll explore options, hear about new opportunities, receive advice from people who know what it’s like to be where you are, and get motivated to advocate for changes that will improve the lives of people with muscular dystrophy. You will also have the opportunity to tell Muscular Dystrophy Canada Board members and staff about what matters to you and how we can help you achieve your dreams. Sounds good, eh?

5)      Calgary is Awesome!

As if all that weren’t enough, YIA is being held in Calgary, Alberta.  Whether you’ve never been or live nearby, it’s a great reason to visit a beautiful part of our great nation!

See you in August at Youth in Action 2012! Register today!

Let’s Make Muscles Move

Muscular Dystrophy Canada is joining in conversation. We happily share on social media channels such as Facebook, Twitter, YouTube, Flickr, and Google+. The creation of community by sharing photos, videos, stories and links on these channels lets our organization reach out to our clients, supporters, volunteers, and the public, and in turn, these same people can reach out to us.  Share with us what you’re interested in and what’s new in your region.  This is the driving idea behind creating “Let’s Make Muscles Move.”

This blog will share updates and news on the many facets of the Muscular Dystrophy Canada including our services programs, advocacy initiatives, and research projects.  We’ll share information and stories from our Regions, Volunteer Chapters, our Fire Fighter partners, on special events and fundraising efforts including the Walk for Muscular Dystrophy. We want you to get to know Muscular Dystrophy Canada better and we also want to hear from you and share your own successes and challenges.

Our online community is meant to connect the many people across Canada who inspire, achieve and make a difference by working daily towards our Vision “to find a cure for neuromuscular disorders in our lifetime.”

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