Muscle Matters Awareness Video Receives Honourable Mention

Our organization recently submitted the 2011 Awareness video “Muscle Matters” to TechSoup’s 2012 Digital Storytelling Challenge. Out of 261 entries, Muscular Dystrophy Canada’s digital story has been selected for an Honourable Mention Award for Best Canadian Entry and Best Effective Call to Action!

TechSoup, which invited nonprofit organizations across the globe to submit their videos and photos for the friendly competition writes “The 2012 Digital Storytelling Challenge was a great success, with more than 250 total submissions from social benefit organizations in 24 countries, we were impressed with the quality of the photo slideshows and videos, and all the hard work that went into them.”

You can view the submissions from all the winners, including Muscular Dystrophy Canada.

Thanks to Kristen Del Bianco and Manuel Grados-Andrade, two students volunteers who produced the video.  They also recruited friends and a couple of our very own 2010 Youth in Action participants, Alex Harold & Christina Massad to take part in the video.

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Volunteering as a Student Nurse: Part 2

Every semester, nursing students are placed within many different types of organizations, and fortunately I was recently placed at Muscular Dystrophy Canada.  Since arriving at Muscular Dystrophy Canada this past January, I have had the opportunity to explore the numerous programs and services that the organization offers to its many clients. As a potential community health nurse, I have come to realize that so many different aspects of a person’s life can affect their health.

In the past few weeks I have been contacting clients regarding the Information and Education Conference in Windsor, Ontario that is to be held on April 21, 2012. This conference is a great opportunity for clients and family members to explore and learn about nutrition, exercise, and share experiences that can affect the overall health and daily living of people living with neuromuscular disorders. If you are interested in attending this conference you can email Karen.Dunbar@muscle.ca.

This is one of the many conferences that Muscular Dystrophy Canada offers throughout the year; Muscular Dystrophy Canada offers countless services in areas of information, education, and support, among other services, that I have found to make a difference in the lives of people living with neuromuscular disorders throughout the nation.

Danielle Wells is a third year nursing student at Ryerson University.

Volunteering as a Nursing Student: Part 1

In the winter semester of 2012, it is my honour to receive a placement opportunity from Muscular Dystrophy Canada – Ontario & Nunavut. This delightful experience has enhanced my understanding and knowledge on neuromuscular disorders, as well as the role of community nurses in supporting and making a positive change in people’s life. Muscular Dystrophy Canada offers continuous support, and numerous services to enhance the lives of those affected by neuromuscular disorders. As a student nurse in the organization, there are many areas that can be explored and offer help to our members.

In fact, one of my key roles is to renew and maintain an up-to-date database for our clients in order to share any pertinent information regarding new programs, research and conference that are available to enhance one’s health and wellness. Therefore, if you are a client to our services, and if there are any recent changes to your mailing address, telephone number or email address, please contact our client services at 1-866-687-2538 or servicesontario@musle.ca to leave a message about your most up-to-date contact information. We value each of our members, and we hope to serve you better!

Another role that I have is to engage our members to attend support groups and strengthen their community actions. Here is a shout out for all members living around the Hamilton area. The Hamilton Parent/Child Support Group proudly invites you to join their monthly meeting on sharing experiences and knowledge on neuromuscular disorders. Meetings vary with guest speakers and presentations. Other times they offer fun classes aimed at stress reduction, such as yoga. Meetings are held once a month on the third Wednesday from 7pm-9pm at Dominic Agostino, Riverdale Community Centre located at 150 Violet Drive, Stoney Creek, Ontario. To register your attendance, RSVP to servicesontario@muscle.ca. Hope to see you there!

Jennifer Ho is a third year nursing student from Ryerson University.

Encouraging accepting and inclusive environments

Recently the themes of acceptance and bullying have been coming up again and again.  It’s a popular topic in the media and that’s because many people can personally relate.  The feelings of empathy are prevalent for those who are victims of bullying and for those who are not accepted for who they are.  As a kid, or maybe as a human being, everyone mostly just wants to fit in without drawing attention to their differences, but in some circumstances, including for those who have a long-term diagnosis of muscular dystrophy, the differences can be hard to hide.  But more importantly, differences aren’t meant to be hidden.

Some of the most basic lessons we are taught at a young age –being kind and respectful—get left behind at some point.  One of Muscular Dystrophy Canada’s programs, HOP for Muscular Dystrophy, aims to teach nursery school and kindergarten students the importance of acceptance.  The HOP for Muscular Dystrophy program infuses an educational component that goes beyond the fun hopping activity complete with bunny ears and crafts to promote compassionate and inclusive school communities, where people of all physical abilities are accepted for who they are.

Sometimes these lessons are forgotten, and by pre-teen age they can become huge issues.  An MDC staffer shared this article about the difficultly one boy with a disability had making friends as he got older; once some pre-teens start to register differences more acutely then they draw away rather than put the bit of extra effort that could result in a rich and rewarding friendship for both parties.

Sometimes it’s worse; bullying is an incredibly timely and widespread issue.  An American film called BULLY, which opens at the end of this month, chronicles the lives of individuals and families closely affected by bullying by attaching their stories to the statistic that in America over 13 million children will be bullied this year. A 2007 self report survey among Toronto youth indicates that 16% of youths in grades 7 to 9 had been bullied on more than 12 occasions during the year prior to the survey.  A 2007 review of international literature by Canadian authors finds kids with physical and developmental disabilities are at greater risk of being bullied.  Use this resource when you are navigating bullying and the child with special needs.

In September 2011, Mitchell Wilson took a tragic and drastic measure, and he took his own life.  Mitchell had muscular dystrophy and had been a victim of bullying.  Students from his school region, the Pickering Family of Schools, chose to honour and remember Mitchell by rallying together to effect change and stand up against bullying.  The i AM WHO i AM campaign raised almost $20,000 in three months for Muscular Dystrophy Canada, and their message was loud and clear—acceptance and inclusiveness for everyone.

Acceptance is something that everyone seeks and should receive. I am who I am, you are who you are, and that should be okay.

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.

i AM WHO i AM

“Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.” -Margaret Mead

That’s exactly what three students at Pine Ridge Secondary School in Pickering, Ontraio have started to do.  Students from the 19 schools that make up the Pickering Family of Schools have united for an initiative called i AM WHO i AM.  The campaign started fundraising in November 2011 and this past week presented a cheque to Muscular Dystrophy Canada for $19,341.48, almost double their initial goal.  Students collected donations, and sold green bracelets and shirts which featured their campaign slogan.

Their donation will help to provide more families with valuable support and services including funding special equipment, advocacy, or just providing someone to talk to through Muscular Dystrophy Canada support services.  The aim was not just fundraising. The students promote acceptance and inclusiveness as well as awareness of Muscular Dystrophy Canada. The i AM WHO i AM campaign aims to create schools and communities that honour the equity and worth of all; recognize the value and dignity of each individual; strives to inspire students, parents, staff and community members to support each other in learning, working and living together.  This campaign honours and remembers Mitchell Wilson.

The dedicated student leaders along with all students at the 19 Pickering schools who participated in i AM WHO i AM have made an incredible impact.  They were inspired to make a difference at their schools and in their communities.  Their message is simple and clear—acceptance for everyone.  Bravo to Cody, Sarah and Bryan for seeing the change they could effect by rallying students for a worthy cause and encouraging acceptance of everyone for being exactly who they are.

Watch our video from the special presentation on March 2, 2012. 

The Golden Rule of Disability Etiquette

In February, our social media channels focused on disability etiquette, and discussing appropriate ways to communicate and interact with people with disabilities. There are many different forms of this etiquette: terminology; wheelchair/mobility; hearing, vision or speech impairment; or hidden disabilities.  Read more about disability etiquette. There are definitely correct ways to converse with a person, and much of our feedback celebrated proper etiquette being at the forefront of our social conversation.  Many people contributed to the dialogue by emphasizing its importance, most notably mentioning to never pat a working helper dog.

All of the etiquette is important, and while it may seem like common sense to those who experience living with a disability, it may not be as obvious to others.  It’s important to create awareness and encourage others to educate themselves on proper disability etiquette.  One respondent acknowledged that after participating in Wheelchair Dare, an event that has fundraisers spend a day in a wheelchair, he could already relate to some of the mobility/wheelchair etiquette and see how important it is to share.  Of course, everyone should remember the “Golden rule” for interacting with someone who has a disability is the same as interacting with anyone – treat the person with kindness and respect!  Share your knowledge with others and encourage inclusive environments for everyone.