Archive: December, 2014

Categories

Recent Posts

Tags

Archives

Welcome to Holland

(c) 1987 by Emily Perl Kingsley. All rights reserved.

The following poem by Emily Perl Kingsley was read at the Nanaimo Walk for Muscular Dystrophy back in September of this year. Hannah Houghton and her family were the ambassadors for this Walk. As part of their speech, they read Welcome to Holland, and we thought it was a lovely piece that our community could relate to.

WELCOME TO HOLLAND

by
Emily Perl Kingsley

(c) 1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

 

(POEM TAKEN FROM :  http://www.our-kids.org/archives/Holland.html)

Learn more about the Walk for Muscular Dystrophy: http://muscle.ca/events/walk-for-muscular-dystrophy/

 

Tags:
Posted on:
No Comments »

Laps for Muscular Dystrophy

Laps4MD-2015Laps for Muscular Dystrophy is a new fundraising campaign in support of Muscular Dystrophy Canada. It was created by Brad Miller, a client who is also the author of the My Becker’s Story blog. Brad started sharing his story about living with Becker muscular dystrophy five years ago. He is also a huge motorsports fan. Brad grew up around racing as a child and is thrilled to be able to combine his love for motorsports with raising awareness of muscular dystrophy in Canada. Laps for Muscular Dystrophy was created as a great opportunity for Canadian race car drivers or teams to join together with Muscular Dystrophy Canada to help make a difference in the lives of over 50,000 Canadians affected by a neuromuscular disorder.  Race drivers who joined in support of Laps 4 MD help raise much needed funds by donating $1 from every lap they lead to Muscular Dystrophy Canada. Brad is so happy to have the support of some of Canada`s top drivers and excited about the future of Laps 4 MD.

Shelby-MillsIn 2014 Laps 4 MD was supported by Dirt Track racer Shelby Mills. Shelby Mills is 22 years old and her home track is Brighton Speedway located in Brighton, Ontario. She was excited to have the opportunity to support Laps 4 MD during the 2014 race season and helped to raise $100 in support of Muscular Dystrophy Canada`s mission! She says, ”As a nursing student, and now as a nurse, I wanted to incorporate that part of me into my racing. Supporting Laps 4 MD allows me to continue to participate in the sport I love but also help people and raise awareness for a great cause.”

joey-mccolmDuring the 2014 race season, Laps 4 MD also welcomed well known race car driver Joey McColm as a supporter. Joey currently competes in the NASCAR Canadian Tire Series and is based out of Ajax, Ontario. McColm is pleased to be competing in the #25 Canada’s Best Racing Team Dodge. He is also a top contender to win NASCAR Canadian Tire Series most popular driver. All year long during pre-race autograph sessions, you could find Joey surrounded by a large crowd as he is truly a fan favorite. We are really looking forward to working with Joey yet again in 2015 as we have big plans in store! We thank Joey for all his support in 2014 and his donation of $250.

There is no doubt that in its first year Laps for Muscular Dystrophy has Ben-Young (2)already been a huge success. Brad is happy to report that Laps 4 MD has done a lot to raise awareness of muscular dystrophy amongst many race drivers. So much so that at the end of the 2014 race season added two more racers! This included Canadian resident Ben Young, who competes in the British Superbike Championship with Team WD40. Young supported Laps 4 MD in his last two races of the season. He says, “It’s an honour to help support Laps 4 MD and their efforts to help make a difference in the lives of over 50,000 Canadians affected by neuromuscular disorders.”

Matt-Garwood-Formula-1200Near the end of the 2014 race season Laps 4 MD was happy to welcome Matt Garwood to the long list of those support Laps 4 MD. Garwood currently competes in the Formula 1200 Series and in 2012 was also awarded Rookie of the Year. Brad is so excited to have Matt join in support of Laps 4 MD and is assured that he is excited to be able to play a role in helping to improve the lives of those affect. Garwood says, ”It is an honour to support and represent Laps 4 MD throughout the conclusion of this year and in to the 2015 racing season. Laps 4 MD has been helping people with muscular dystrophy, and I am thrilled to lend a hand.”

As you can tell by the comments from the drivers who are already supporting Laps for Muscular Dystrophy, the future seems bright for this new fundraising campaign in support of Muscular Dystrophy Canada. Brad simply can’t wait till the start of the 2015 race season which is already shaping up to be even bigger and better!

____________________________

My name is Brad Miller I am a freelance journalist living with Becker Muscular Dystrophy, a condition which limits my ability to walk and gets progressively worse over time. I created the My Becker’s Story blog in 2010 to share my story and to help raise awareness about Muscular Dystrophy. Have a look at Brad’s blog:  http://my-beckers-story.blogspot.ca/

Check out our story on Riley, a client who races!

 

 

 

Tags:
Posted on:
No Comments »

The Rondeau Family

Rondeau Family 2013bThe Rondeau Family – parents Cheryl and Steve, and daughters Crystal and Cherisse – put in over 1500 hours each and every year working tirelessly to support individuals and families affected by muscular dystrophy.

Crystal was diagnosed in 1990 with Spinal Muscular Atrophy Type 2. An amazing young woman who wants to teach others about living with a disability, Crystal has started a blog on her Facebook page, “Crystal Lee: My Uncensored Life,” where she shares her life with her followers. She also shares her story in the community through presentations at schools, community centres, churches and more. In addition to living with muscular dystrophy she is a cancer survivor – being diagnosed and beating leukemia in her teens.

Crystal was the recipient of a Safeway Mobility Grant through Muscular Dystrophy Canada and received funding to purchase a TDX SR Powerchair that gives her freedom and independence.

Cheryl has been the face of muscular dystrophy in the Manitoba community for over 14 years. She has co-chaired the Volunteer Chapter in Manitoba for all but one of those years. With the help of her family, Cheryl organizes breakfast meetings, picnics, fundraisers, Christmas and Halloween parties, and more to engage participation of individuals and their families. In addition, Cheryl acts as a support person for families with neuromuscular disorders. Whether it is sharing her story with a newly diagnosed family, offering support and encouragement to another mom struggling to deal with the disease, or helping Muscular Dystrophy Canada staff to connect with clients and families, Cheryl puts in countless hours to help people in the community.

Steve Rondeau is the support person behind Cheryl, always available to drive her where she needs to be, to help coordinate events, attend meetings, and whatever else needs to be done. In addition, he is the photographer at many special events like the annual Christmas party. Steve has also been a driving force in the creation of “Rumble the Road for MD” – a motorcycle and muscle car rally, now heading into its third year!

In addition to being a support person to her sister, and inspired by her parents commitment to volunteerism, Cherisse became the secretary for the Volunteer Chapter. Recognizing that living with a disability can be isolating and lonely, Cherisse recently implemented a communication strategy where all Chapter members receive a card on their birthday.

With a “tell it like it is attitude” and seemingly endless amount of energy, this family embodies the philosophy of volunteerism giving their time, talent and resources to meet the needs of others and make a difference for those living with muscular dystrophy.

When asked to share her story with Muscular Dystrophy Canada – Cheryl said, “I would be honoured; I am very proud of all that my family does and very grateful for all Muscular Dystrophy Canada does for us.”

Tags:
Posted on:
No Comments »

Caring Enough to Give

GENERAL_circle around puzzleIf all the world’s a stage, our dedicated volunteers at 38 Chapters across the country deserve a standing ovation for their starring and supporting roles. Our passionate Chapter members bring us together and strengthen us.

They provide educational sessions, ongoing peer support and mentorship. They conduct outreach to share the stories of individuals affected by muscular dystrophy with members of the public, from children in daycare to students,
career professionals, Fire Fighters and the wider community. They plan and organize countless activities to spread some joy, advocate for change, raise awareness and essential funds.

They do it all with grace. And with the constant awareness that, without the generosity of our caring donors, we could not afford to offer the programs and services
that support our community.

At the Halifax Chapter, Wayne Holland, 55, is both Chapter President and an active member. Initially diagnosed with limbgirdle muscular dystrophy and later, Becker muscular dystrophy, for 15 years, along with other volunteers, Holland has planned activities (from family bowling tournaments to wheelchair hockey and Youth Nights). As
he explains it, the Chapter “saves a lot of people grief and headaches when they don’t know where to go.”

Over the years, Holland has received partial funding for four wheelchairs; a lift system for his bedroom and breathing apparatus for sleep apnea. He admits, “If it weren’t for Muscular Dystrophy Canada and my wife’s medical benefits, I don’t know what I would have done.”

Graphic designer and photographer, Nick Vidito, 27, was diagnosed with Duchenne muscular dystrophy at age four. At seven, he needed a manual wheelchair and at 12, a power wheelchair.

“I have benefited very well from the support I’ve received,” says Vidito. “Muscular Dystrophy Canada has helped me with funding for equipment and without this equipment I couldn’t live my everyday life.” A former Halifax Walk for Muscular Dystrophy ambassador, Vidito’s public speaking skills have raised awareness and sourced Walk sponsors. Last year, he raised over $4,600. Says Vidito: “I fundraise for muscular dystrophy to give back to people in need.”

_________________________

This story is a part of the 2013-2014 Annual Report. Read the full document here.

Tags:
Posted on:
No Comments »

International Day of Persons with Disabilities: Keith Knight

As the world celebrates the International Day of Persons with Disabilities on December 3rd, 2014, we decided to take a look at some of the interesting ways those in the Muscular Dystrophy Canada community use technology.

We asked client Keith Knight to tell us about how he uses technology to raise awareness, funds and to simply have some fun!

_______________

20121004_170042As an individual with a neuromuscular condition, I’ve grown to rely on technology. Through the use of my computer, I’ve been able to reach hundreds of thousands of people and show them that anything is possible if you put your mind to it. I’ve made friends from all over the World when before I struggled to make friends where I live because they only saw me as different. All of this has been from my involvement in playing computer games.

I’ve played video games since I was a little kid as it was one way for me to connect with my peers that wasn’t physically limiting like sports as long as I 20131004_183508could find a way to play. As I got older, playing console games became more challenging as the remotes got more complex, so I transitioned to computer games. Over the years, I’ve tried everything from touchscreen to voice recognition to motion sensors to interface with a computer to find a best method. Every solution has its own merits and downsides, and the method I use changes depending on the game I’m playing. I currently use a combination of switches by my feet and elbow, typing with a pen in my mouth, and moving my mouse with my cheek/earlobe. While this method is quite low tech compared to the alternatives out there, I’ve found that things like motion sensors and neural sensors have too much of a delay in their current forms to compete in most games. With that said, the future is bright for individuals with neuromuscular conditions who enjoy playing video games. Neural sensor based controllers will one day be good enough to allow us the freedom of being restricted by our physical limitations, and I look forward to that day.

___________

Here is a great short documentary on Keith, showing both his gaming and his day to day life.

[youtube http://www.youtube.com/watch?v=hH0y2YaLxY8&w=640&h=360]

 

You can check out Keith’s YouTube page so see videos of him in action – like this one:

[youtube http://www.youtube.com/watch?v=7eNv88ojGMQ&w=640&h=360]

WP-Backgrounds by InoPlugs Web Design and Juwelier Schönmann