Archive: March, 2015

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Journey for Janice: The Beginning

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Hi! My name is Jordan Freedman and I am training for a month long bike ride from Toronto to Halifax.

Why would anyone do such a crazy thing you may ask?

It all started back in 2012 when I decided to turn one of my greatest passions into something truly meaningful. I have been a cyclist for as long as I can remember; during high school I increased my route distances to the point where none of my friends were willing to ride with me anymore. After reaching the 100 km milestone in 2012, I decided to ride for a cause and entered the Ride to Conquer Cancer for two consecutive years. Each year I finished the weekend proud of my performance and my contribution to cancer research, but I always felt like there was more left in the tank. I knew at that point I wanted to do something bigger.

My motivation for biking for charity comes from the passing of my mom, Janice Freedman, from Polymyositis, a form of muscular dystrophy. My mom was diagnosed with Polymyositis in January 2011; this disease slowly took away her ability to work, walk and even swallow. She battled through the disease and was strong enough to improve throughout the remainder of the year. In the winter of the following year, she relapsed with conditions worse than the previous year. My mom was not able to gain her strength back and passed away in April 2012. I have always wanted to dedicate something very special in memory of her and help others who suffer from similar diseases. A few years passed before anything really materialized.

One evening in June of 2014, I was hanging out with my two best friends – I will never forget this night as it truly sparked the idea for this ride. My friends were initially interested in backpacking across Europe in the summer of 2015, but after reviewing the finances, we decided it was not the best option for all of us. This is when I brought up the idea of biking across Canada. My friend, Hartley Ruch, was immediately interested, realizing that we would still be able to travel together, but this time for a great cause. That night is where this Journey truly began.

Hartley (R), and Jordan (L)

Hartley (L), and Jordan (R)

Over the summer, both Hartley and I were planning routes, talking logistics, and thinking about what organization we wanted to support. When we finalized our tentative plans, the route spanned over 2200 km! It could have been as short as 1800 km if we travelled through the United States, but we decided to stay true to our roots and go Canada all the way (I also really wanted to see PEI)! Hartley has always been an athlete so he was not satisfied with just acting as the support car the entire way. Hartley is not a cyclist, so he set a goal for himself to run over 100 km over the course of the trip. Early October is when we reached out to Muscular Dystrophy Canada. We were thrilled with their response and incredible support to help us reach our goals of completing this ride and gaining donations along the way!  It was truly a great month that motivated both Hartley and I to go through with our plans.  I met with the National Director of Individual and Corporate Giving for Muscular Dystrophy Canada, Kevin Harrison, and settled on the May 24th event start date. We also solidified the name for the ride which Hartley cleverly came up with, ‘Journey for Janice’.

In the days since, we have been working incredibly hard to make this ride a reality and have received incredible support from various friends, family and especially from Muscular Dystrophy Canada. Both Hartley and I have been training hard over the course of the year. I have been taking the 2200 km distance very seriously and I have been doing many indoor bike training sessions to keep in shape.

We are very excited for next few months leading up to the ride and the event itself! ‘Journey For Janice’ has already become larger than we ever imagined, but we do not want to stop here. We have high hopes to fulfill and exceed our goals along the way. We have an initial goal of $10,000 that we will hopefully increase closer to the event.  Our progress can be followed on our ‘Journey For Janice’ Facebook page: https://www.facebook.com/journeyforjanice and donations can be made at our website: http://muscle.ca/events/journey-for-janice/

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How I See It: Ivana explores the world of technology

technologyIt’s pretty amazing how much technology has evolved in the last decade. It was about twenty years ago when Steve Jobs said he would one day build a computer that could fit in your pocket, and everyone laughed at him, but look where we are now. It’s almost uncommon to not have a computer in your pocket now. And that’s just phones. Google has created a self driving vehicle, BMW has created a wheelchair that can climb stairs, and eSight has created glasses that allow blind people to see. Using technology to help people with disabilities isn’t just a new phenomenon; it’s a list that will continue to grow.

The first iPhone that came out was a huge advancement, but what about people with vision impairments who relied on keyboards? All of the sudden, research wasn’t a great importance for companies. All of that later changed because Apple has since developed voice enabled tools and other innovations that make the iPhone more accessible and easier to use for people with disabilities. iPhone and Android phones already include features for the disabled, while Samsung’s Galaxy is the first to incorporate eye-tracking technology for hands-free use. E-book readers such as Kindle and Nook are developing new methods of technology for people with learning disabilities and other conditions.

Disability inspired innovation isn’t something new; it has been around for centuries. Thomas Edison envisaged the phonographs as a means of recording books for the blind. Talking books and even door handles were first created for people with disabilities. Some of the best products you might be using today were designed with disability in mind. Today some of the biggest tech companies like Google and Yahoo have teams specifically working on building technologies that are accessible to everyone. Microsoft has even created a feature for people with ALS who can control a tablet using their eyes. Steve Gleason, a former National Football League player who has ALS, has said, “Until there is a cure for ALS, technology is a cure.” I completely agree with him.

There are more than 1.2 billion people with some type of disability today. Currently there are more than 4,000 assistive technologies that have been designed for the disabled and seniors. Companies today are turning their research and development to assistive technologies. What the future holds for assistive technology is sure to be exciting. There is sure to be new improvements and existing technology is on-route to improve.

Home and computer electronics have allowed people with a disability to have more of a normal life. You can open and close doors through a home security app, you can control your wheelchair, etc. There is even an app that allows piano players to turn sheet music with a nod of the head. To me, it’s amazing that someone can read, write, and communicate with others without even moving. Apps are huge right now and I think it’s safe to say, there’s an app for everything. I did some research on apps because most likely you have these on your phone, tablet, or computer. Some that I found helpful include:

  • Parking Mobility – This app makes finding disabled parking very easy. Parking Mobility can clue you into disabled parking places around you by using iPhone’s GPS capabilities. You can also leave notes for other travelers or residents about disabled parking spots that you’ve located that aren’t currently on the map. The more you use it and update it, the more it helps others.
  • Emergency Information – This is a very useful app for people with a disability. The My Emergency Info app holds vital medical information such as allergies and medications. There is also information needed in case of a medical emergency such as contact information with your doctor, etc.

Technology isn’t going to slow down anytime soon and it’s exciting to see all these new advances becoming available. I am beyond thrilled to know that ten, twenty, thirty years from now I might still be able to do things on my own with the help of technology! Independence is priceless, and I want to continue to do everything I love and I know the tech industry is nowhere close to being done. That’s why it’s so exciting, because the sky is the limit.

“Our vision is to create innovative technology that is accessible to everyone and that adapts to each person’s needs. Accessible technology eliminates barriers for people with disabilities and it enables individuals to take full advantage of their capabilities.” 
—Bill Gates, Chairman, Microsoft Corporation

Microsoft is an amazing company that recognizes all sorts of minorities. What they offer goes beyond what I can put in this article. If you want more information go to Microsoft Accessibility at www.microsoft.com/enable.

It is extremely hard to feel your body changing and you are powerless to it. The body that once pushed you, is now starting to work against you. Individuals with disabilities meet barriers of all types but technology is defiantly lowering many of these barriers. Do not let your disability affect your lifestyle; there are tools and devices that exist to help you overcome these obstacles.

“Out potential, is not contained in our physical bodies but rather in our mind and our spirit.”

           - NFL hero Steve Gleason. 

___________________

Ivana was born in Sanski Most, Bosnia & Herzegovina but moved to Canada at the age of 3. She was diagnosed with LGMD a few years ago and it has forever changed her life.  She is a regular contributor and her blogs will be everything she has learned along the way and what she continues to learn today. Read Ivana’s personal blog at: https://milarosa6.wordpress.com/ 

 

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Get your Walk on!

14990125164_334eb9b271_zThe 2015 Walk for Muscular Dystrophy season is upon us! It’s time to get on those computers and sign up to walk, wheel or roll at your local Walk4MD.

The Walk is a national celebration in support of Canadian individuals and families affected by neuromuscular disorders. This fully accessible event takes place in 60 locations across Canada, and includes activities for kids, snacks, refreshments and prizes.

There are many ways and reasons to get involved. The Walk for Muscular Dystrophy is the perfect opportunity to make new friends and build connections with others who understand the effects of living with a neuromuscular disorder. Create your own network of support and together, raise awareness of neuromuscular disorders.

“The Walk is a great way for people to mingle, and meet others while supporting such an important cause. Not only can we raise awareness and funds, but we can also connect with each other while doing so. There is something to be said about strength in numbers,” says Maayan Ziv, one of the ambassadors for this year’s Walk.

Every year we offer the chance to be recognized for your support with exclusive items and rewards. To recognize and thank you for your individual fundraising efforts and support, we are offering the following gifts when you arrive at your Walk:

15424775518_c49fe0a87b_kIf you raise $75 or more, you will receive a Walk for Muscular Dystrophy t-shirt. The t-shirt is different every year and showcases the year and the slogan for that year. It is a favourite collectable for all ages. If you’re on a team, we think that getting your team members to sign or draw on your shirt will make it full of special memories from the day.

If your individual fundraising total reaches $500 or more, you will receive a USB Power Bank Charger in addition to your t-shirt. This small device packs a powerful punch who you need to charge your phone or tablet on the go.

The Early Bird Contest is back too. Register and raise $60 online at least 30 days before your Walk and you will have the chance to win an iPad mini. And as always, many Walk events have their Walk for Muscular Dystrophy Awards which may include Team Spirit, Top Fundraising Team, and Top Fundraiser (individual).

We’re also introducing the Muscle Movers Club, NEW for the 2015 Walk for Muscular Dystrophy season.

Individuals who raise $500+ with their Walk fundraising will be recognized as a member of the Muscle Movers Club. There will be photo opportunities and your name will be displayed at your local Walk as an official Club member the following year. After the Walk you will receive a thank you letter, including information on how your contribution has helped those affected by neuromuscular disorders.

15424774688_0b469c39d4_kCheck out our Fundraising Toolkit for ideas of how to kick start and grow your fundraising this year.

Your contribution makes a difference. By taking part in the Walk for Muscular Dystrophy, you will be supporting individuals and families affected by neuromuscular disorders through initiatives including education, information, support, advocacy and funding for research and assistive devices.

Let’s make muscles move! Register for your local Walk4MD and get fundraising today. www.walkformusculardystrophy.ca

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MuscleFacts creates lasting partnership with the Champlain School

Students of Miss. Beaudoin's class

Students of Miss. Beaudoin’s class

For the past several years, Muscular Dystrophy Canada has been organizing an awareness program called MuscleFacts for schools and families. This program aims at creating more welcoming school environments for people who have a neuromuscular disorder and works to promote a better understanding of what a disability is. Through interactive presentations, games and activities, this program helps children understand what physical disabilities are and helps educators efficiently integrate children with a disability by breaking down barriers, one class at a time.

On average, Muscular Dystrophy Canada gives about 50 MucleFacts presentations per year. These visits often mark the beginning of a wonderful partnership, like the one with the Champlain School in Sherbrooke, in the beautiful province of Quebec.

 

Alexis Boisvert with mother and brother

Alexis Boisvert with mother and brother

Alexis and his school

The Quebec Services Team went out twice to meet the students at Alexis Boisvert’s school. Alexis is a 10-year old boy who suffers from Steinert’s myotonic dystrophy. Afterwards, Alexis’ special education teacher contacted us because the school wanted to participate in the Halloween fundraising – where each child in the class is given a little piggybank to take with them on Halloween night to ask for small change donations. The school raised a little over $700.

The Christmas Market

But the ChamplainSchool didn’t stop there. Third-grade students from Ms. Lorraine Beaudoin’s class carried out a project that would allow the students to give back to their community. Since all the students know Alexis well, they decided to organize a Christmas Market, with the proceeds once again going to Muscular Dystrophy Canada! They all chipped in and created holiday decorations. They also

Students of Miss. Beaudoin's class

Students of Miss. Beaudoin’s class

asked other classes to participate and to provide various pieces. The Christmas Market was held on December 12th and raised $1,165.

By taking part in all these activities, students and teachers at the ChamplainSchool helped Muscular Dystrophy Canada fulfill its mission. But beyond raising funds, the focus was on involvement and awareness. The school and its teachers coached future adults who, through that experience, will be more aware and more inclined to get actively involved in their community and to help others… which is very worthwhile!

Many thanks to the Champlain School for helping make muscles move!

 

Learn more about MuscleFacts here: http://ow.ly/JxbwT

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Up on the rooftop: 2015 Fire Fighter Campouts

Every year Fire Fighters across the country battle  the elements – whether they be snow and cold or sun and heat – to take to the roofs of local business and malls to raise awareness and funds for muscular dystrophy. The Rooftop Campout has become an annual event for many Fire Departments and we want to thank them for taking the time to organize and camp to help make muscles move!

We’re captured a sense of what goes on through quotes and tweets from the Rooftop Campouts experience.  You too can be part of it – check out Campouts locations here:

“Airdrie firefighters are all smiles as they count down their final hour of the 72-hour Rooftop Campout at the local Boston Pizza…” (Calgary Journal)

“When Chris Ireland, our Muscular Dystrophy Canada Firefighter representative, approached us with the idea of the Rooftop Campout I knew that I wanted to be on that rooftop. It was something new and fresh that still incorporated filling the boot but with a twist and is for a great cause.” Jason Davidson, Sarnia (Day In The Life)

“All of us are paramedics, we’ve worked with it, we’ve seen what it can do to people and their families, so it’s nice to give back.” Amber Gall, Leduc (Global)

Airdrie

MedHat

Leduc

guelph

Check out our events page here for upcoming Rooftop Campouts!

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