Innovative fundraiser inspires an online community

Do you like playing online games? Keith Knight does, and this past week he turned that passion into a fundraiser which exceeded his wildest expectations.  In one of the most creative fundraising techniques we’ve seen, Keith raised over $5100 in only 11 hours by playing video games and streaming it online! Keith raised funds for the Surrey Safeway Walk for Muscular Dystrophy, which was September 22, 2012.  His final total ended up being over $7500 raised for Muscular Dystrophy Canada.

Keith started a Vlog to explain his fundraising efforts to the many people who saw his streaming video and supported his cause.  In the Vlog he also explains how he plays his favourite games.  Keith has muscular dystrophy and has adapted the way he plays computer games to fit his abilities.

Keith was a participant at the Youth in Action conference held in August as well as a recent recipient of a Canada Safeway Moving Muscles Scholarship.  He used his experience at YIA to encourage his online donors, many of whom are complete strangers, by promising to share a video of himself trying break dancing during the YIA dance party after a performance and some encouragement from Luca “Lazylegz” Patuelli.

Keith combined a few of his interests to fundraise for the Walk for Muscular Dystrophy, and the online community responded to his efforts.  You never know what you’ll get back when you put yourself out there.  Great job Keith!

What are your passions? How could you turn Keith’s inspiring actions into a plan to help your favourite cause?


A Day in the Life: Luca “Lazylegz” Patuelli

28 year-old Luca “Lazylegz” Patuelli, professional B-Boy (Breakdancer) and motivational speaker lets us in on his life for a day.  Read ahead as the national ambassador for Muscular Dystrophy Canada shares a backstage pass to one of his jam-packed days at this year’s Youth in Action Conference in Calgary, AB.

 Saturday, August 26, 2012:

8:00am – Live interview on Global TV – Luca wakes up at 6:00 am to join Marla Spiegel (National Director, Research, Programs & Services) and head to the studio for the interview where they promote YIA12 and Luca’s inspiring message of  “No excuses, no limits.”

8:30-9:30am – In the taxi back to the hotel, Luca catches up on social media and tweets about the interview.  After a quick change of clothes, he meets up with several MDC youth delegates and their families for breakfast at the hotel.  Luca attends the Activism seminar at YIA12 presented by Danielle Peers, Ian Gordon and Lindsay Eales.  This informative and funny presentation works on recognizing, resisting, re-imagining and remaking the role of disability on a local scale and across Canada.

1:00pm – Periodical rest is important when you have Arthrogryposis like Luca or muscular dystrophy like many YIA participants, so after a short rest Luca heads to downtown Calgary to visit the Eau Claire Plaza for Pulse Studio’s HipHop All Style Dance Competition where he dances with local Calgary dancers.

3:30pm – Another taxi ride – and lunch en route – heading back to the hotel.  Luca participates in the discussion during the Sexuality and Healthy Relationships education session alongside Heather Cobb and Stephanie Lebrun. This session helps the youth discuss some of the myths, stereotypes and realities of healthy relationships and sexuality.  Luca helps participants reflect while sharing some of his personal experiences.

7:30-8:30pm – Luca attends the gala dinner after finishing sound check, setting up a merchandise booth, and resting and stretching in preparation for his performance.  Then Luca’s motivational entertainment performance for the 62 youth in attendance begins and the party starts!

9:30pm –Dance party with the rest of the Muscular Dystrophy Canada youth and adults is in full swing.  Luca shows off some of his skills as well as teaches some of the youth new dance moves and the youth show off what they already know.  Luca and his fiancée Melissa love hanging out with the YIA12 participants and see them bust a move!

11:30pm – Off to Bed!

Luca is always on the go; he travels a lot for his dance and motivational speaking schedule and loves to meet new people while spreading his message of “No excuses, no limits.”  Muscular Dystrophy Canada was extremely lucky to have Luca share his dance moves and positive attitude with everyone at YIA12!

Luca’s busy schedule continues into the fall as Luca and Melissa get ready for their dance program in Laval (Projet R.A.D) and Luca prepares for ILL-Abilities five-year anniversary festival October 19-21 in Montreal. Check the ILL-Abilities website for more details on both.

Peer to Peer Insight: “Travel is possible for everyone”

With Youth in Action (YIA12) less than a week away, youth along with their families and caregivers, will be heading to Calgary very soon.  Many participants will be flying by air so we took the advice of Dale, a seasoned traveller, on his best practices for air travel.  Hope everyone on their way to YIA12 this week has a great flight. See you soon!

I’ve been playing power soccer for 14 years and have been on the Provincial and National teams.  Because of power soccer I’ve traveled a lot and have learned a lot about what and what not to do.

For air travel, first I make sure that I have everything I absolutely need in my carry on. Baggage can always be lost.  I carry on medication, the Roho cushion from my chair so it doesn’t get damaged, and my sling.  Some of my teammates also carry on BiPAPs and powerchair chargers. Any liquids should be double bagged and in the amounts that are allowed. I carry on anything I can’t be without for 48 hours and can’t buy when I get there.

The morning of the flight I sit on my evacuation sling to be used for transferring. The airline staff let anyone that needs any help board early.  If it’s an Air Canada flight in Canada, they have The Eagle Lift (a hoyer lift that fits down the aisle) I let them know ahead of time that I’ll need it.  As I’m on the way to my seat, I’ll have someone traveling with me taking any loose parts off my chair and taping them to it.

They also need to label the manual release levers and places to lift by, and disconnect the power.  Then they let the baggage handlers know that my chair has non-spillable batteries that don’t need to be removed.

At the other end I take my pre-arranged transportation to the hotel where my pre-arranged equipment is.

The rest of the trip I have fun!  I might take the competition seriously, but I still have fun.  I’ve been to Paris, Montreal, Atlanta, Arizona, California and more.


This article was taken from the Bridges to the Future newsletter.  Visit their website to read  the newsletter or learn more about the Bridges program.

Youth in Action: an eye-opening experience

Everything has beauty, but not everyone sees it.”—Confucius

When I was first diagnosed with Limb Girdle muscular dystrophy, little did I know that it was a blessing in disguise. Getting a long-term medical diagnosis makes it very easy to see the ugly in the world, to see the challenges, the heart break, and the sadness. But over time, my attitude towards a life with a physical disability changed and it was because I met others like me, others who have been affected by a neuromuscular disease.

I hold Muscular Dystrophy Canada entirely responsible for giving me some of the best experiences I’ve ever had. Whether it was discovering the support of Canadian Fire Fighters at fundraising events or attending leadership conferences in my area, I am blessed to have met some of the most beautiful souls I could’ve ever hoped to meet. These people are heroes and they are the reason I’m able to view life as an opportunity to discover the mystery of its beauty. The heroes I’m referring to are parents, siblings, friends, doctors, Fire Fighters, the staff behind Muscular Dystrophy Canada, and most importantly individuals with muscular dystrophy.

But I must say, I met many of these people at one particular event, and it was an event that I wish every Canadian youth with a neuromuscular disorder will attend. It was the Youth in Action conference—a three day event that brings together Canadian youth with muscular dystrophy. During these three days, I made friends, participated in workshops, heard inspirational stories, and gained a fresh perspective on life. I’ve never learned so much in my life than at this conference, and nor did I expect to have as much fun as I did. In fact, I think I had too much fun because when I returned home, I couldn’t stop talking about what I’d experienced!

I would be lying if I said life with muscular dystrophy is easy because the reality is it’s not. But meeting and interacting with individuals who choose to see life for its beauty rather than its flaws was contagious. It gave me reassurance that life is a meaningful gift and it is up to the recipient of this gift to choose how it will be used. At the Youth in Action conference, I created wonderful memories with amazing people and for that I will always be grateful. I’m happy to say I’m still in touch with many people I met at the conference and they’ve become lifelong friends.

I guess it’s true what Confucius said, that everything in life has beauty but it’s up to every individual to choose whether to see that beauty. I choose the latter, and I hope after reading this you do too.

If you’re a youth between the ages of 15 and 24, and you want to experience YIA for yourself get more information or register today.

Christina Massad currently resides in Markham, Ontario and has a Bachelor’s Degree of Journalism. She’s the Chairperson of the annual York Region Walk for Muscular Dystrophy and is hopeful a cure for muscular dystrophy will be found in her lifetime.

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!