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CDA Consultations: National Youth Forum

peelertrudeau Alex Peeler wrote for us about his petition for a National Assistance Program for Persons with Disabilities. This was shortly before he was heading to Ottawa to participate in the National Youth Forum for the CDA consultation process. Here he recounts his experience:

I applied for the National Youth Forum in August after hearing about the consultations for the Canadians with Disabilities Act (CDA) through Muscular Dystrophy Canada. I decided to apply because I have always been an active advocate for persons with disabilities and saw this as an opportunity to put my passion for advocacy to good use. Then, in early October, I received an email from the Minister of Sport and Disability, Carla Qualtrough, saying that I had been chosen to participate in the consultations. I was very excited and proceeded to make the necessary arrangements for my trip to Ottawa.

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Day in the Life of a #Walk4MD Ambassador

2015-1087Hi, I’m Cody Rodgers and I am the Halifax Walk for Muscular Dystrophy Ambassador for 2015! It was a great day, come along with me:

The beginning of the day was very wet and rainy. As soon as my family and I left the driveway to make our way to the Walk for Muscular Dystrophy the sun started to shine and it just got warmer and warmer! We arrived to a vintage fire truck parked outside (as the Fire Fighters are wonderful sponsors of everything Muscular Dystrophy Canada) and a bunch of people inside the Marriot Hotel where the festivities of the day were being held. This included games for the kids, a bbq, musical entertainment and overall good times with friends and family.

Not long after I arrived, Global News arrived and swept me away for a quick interview – which I did not expect, but was maybe a good thing because it didn’t give me time to get nervous. That had been my favorite part leading up to the day – all of the interviews on CTV Atlantic and 89.9 The Wave. It was great getting to meet everybody and spreading awareness about MD. I didn’t mind being treated like a celebrity either! All joking aside, everybody I chatted with were great people.

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So you want to volunteer at the #Walk4MD?

GREAT! As you may know, Muscular Dystrophy Canada is a volunteer driven organization and we are always looking for wonderful people to lend their time to help make the Walk for Muscular Dystrophy the best it can be! Here we list 10 great ways you can volunteer at your local Walk:

  1. Set up tents, tables… everything needed to keep the day running smoothly
  2. Sit at the Welcome Desk with a warm smile
  3. The Registration Table is where all the action goes down! Check people in, get others registered, collect cash donations, and give out raffle tickets
  4. Hand out the incentive prizes (t-shirts and USB charger), and run the raffle at the Prize Desk

    Volunteers at the Victoria Walk 2015

    Volunteers at the Victoria Walk 2015

  5. Many Walk events have a Water Station along the route to make sure anyone who needs a bottle stays hydrated
  6. Have some skill with the camera? Photographers are always welcomed volunteers
  7. Help serve lunch
  8. Face painters bring joy to all the kids – and the kids at heart
  9. Wrap up a great day by helping pack everything up
  10. Be a member of the Planning Committee for next year!

To volunteer at your walk, go to www.walk4md.com and select your location. On that Walk’s page, click the ‘Volunteer’ tab located under the location and date! Thank you to all our volunteers!

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Train, Plan, Sleep, Repeat!

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How does one train for a 24 day bike ride? It’s hard to say there is one correct way. Everybody has different challenges and needs. For me, it was endless hours dedicated to road rides and indoor bike training, and adjusting daily routines and diet.

 For the above average athlete this may not be so much to ask, but for someone with a history of knee pain and other discomfort, it has certainly become one of my largest obstacles. From day one of training, I have been easing my way in slowly to ensure my knee does not act up again. While I made adjustments to overcome my knee discomfort, I still faced a difficult learning curve for what to eat and what not to eat before, during, and after each ride. Thankfully I had Hartley on my side to guide me with his healthy habits!

There is no rhyme or remedy to gaining the type of endurance necessary to last 24 days other than sheer dedication and a healthy mental state. Warning: Beginning indoor training for the first time, especially during the winter is horrible. My first class in December was not the most positive memory. To summarize, I walked in and impressed everyone in the class by telling them I am training for a bike ride to Halifax. I then proceeded to embarrass myself 30 minutes into the lesson by jumping off the bike mid-interval gasping for air. In my defense, the class was called ‘Intensity Tuesdays’ and was filled with experienced riders. The good news is that the training became much easier after three weeks. One of my greatest achievements this year has been proving to people that once I set a goal, I can stick to it. I have had the same fundraising goal and biking distance goal since last summer and I am proud that I have not once thought about lowering these goals. Over the past year I have gained confidence in my biking for pacing to keep stamina. So far this year, I have biked close to 3000 km leading up to the ride. I have come to the realization that regardless of the training I have completed during the past year, I need to be motivated on a day to day basis during my journey to Halifax, or I will not be able to complete 100+ km per day. ‘Luckily’ I have a great deal of motivation going forwards in this journey, and I could not have persevered without the help of so many kind individuals who guided me along the way.

My greatest supporter has definitely been Hartley. Not only has he been my health and fitness advisor, but he has been a major factor in making this journey come together. It’s simple, without Hartley, this journey would not be happening. He has supported me through the year and has taken on the challenge of dealing with me for almost a full month. Hartley and I know we are going to have a lot of fun throughout our travels, but we still have a lot of work ahead of us. In addition to my 2,200 km of biking, Hartley has 2,200 km of driving each way plus 100 km of running.

Before creating the Journey for Janice, I had never met another biker with a similar experience. Fun enough, I happened to meet another cross-country biker a few weeks after starting this project! That same week I was introduced to another cross-country biker. The first biker, Amy Tunstall, biked across Canada last summer raising funds for the Niagara Suicide Coalition for suicide awareness and prevention. The second biker is one of Muscular Dystrophy Canada’s ambassadors, Keith Martin, who biked across Canada in 2008 with four others in support of the organization. These two individuals have inspired me to bring my fundraising efforts to new heights! This ride has already become something much greater than we ever imagined and we have already doubled our initial fundraising goal!

As the Journey for Janice quickly approaches, I look back on this year in awe. The support we have received in memory of my mom and in support of Muscular Dystrophy Canada has been amazing. I don’t think it has sunk in yet, but it is a great feeling to have already raised over $15,000 and an additional $5000 in sponsorship. We are incredibly excited for the journey that lies ahead!

Stay tuned for our blogs throughout our journey to Halifax!

_________________

To learn more about Journey for Janice or to donate, please click here.

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A Week in the Life: The Western Region Services Team

Here's Ted putting some things together for EIA back in August.

Here’s Ted putting some things together for EIA back in August.

“What exactly are you doing this week?”

It’s a question that we hear often, which is good because there is so much to do! To rise to the challenge and provide a better answer than just ‘information and referral’ services, Nate Schwartz (our main man on Vancouver Island) and I decided we would capture what were up to over a one week period.  It was fun to look back on how we are serving persons living with neuromuscular disorders and it’s our pleasure to show you some examples of our interactive and diverse days!

We were ‘out’ there to make those community connections. 

We truly believe that the lives of the people we serve are constantly changing and so we try to make as many community connections as possible.  Just last week Nate got in touch with a local physiotherapy clinic that needed some insight on how to provide better services to people living with a disability.  For myself, I was also asked to meet with various startup businesses on how they can make their services more affordable for people living on limited income.  These types of meetings are exciting to us as you get to see how so many different organizations are making a genuine effort to better serve our clients.

We connected people to our resources and community networks. 

If we don’t have the answer to your question, then we will find someone who does! Nate had a great opportunity connect a youth now starting his university experience with local campus resources and contacts.  I had the opportunity to work with a few educational leaders on how to connect their field staff with available MDC materials to improve their practice.

Nate (centre) with volunteers Debbie and George

Nate (centre) with volunteers Debbie and George

We supported our fundraising partners as “John(ies) on the Spot”!

Raising funds for our organization is a tough job and we value that service tremendously.  Last weekend the BC Services team had the pleasure of supporting the BC fundraising team during the annual provincial Firefighter Advisor Leadership conference.  We got to engage the firefighters, mingle with families, move tables and chairs, collect tickets and even install a raised toilet seat! It’s all in the name of team work—“You call, We haul”

We were constantly working behind the scenes so that others can succeed.

A great deal of the work we do in the community is a combination of hard work and preparation.  Nate’s an amazing motivator, so his webinar prep work and client follow up needs to be carefully thought out and planned. You just never know when someone will decide to kick it into high gear, so Nate always has to spend some time preparing to catch that lightning in a bottle!  For me, I’m working continuously to make sure conditions are optimal for the services staff so that they can be their own lightning in bottle.  Day in and day out, they serve our clients with grace, dignity and style, and it’s important to me that we provide them with that opportunity to be at their best with what we have.

So there you have it! It is equal parts of community engagement, team work, networking, planning and a 100% rock n roll.  If you’re curious about what we’re up to, just strike up a conversation with us and if you need a toilet fixed, we just might be able to take care of that too.

Cheers

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Ted Emes, Director of Services-Western Canada. To learn more about the services Muscular Dystrophy Canada offers, click here.

Nate Schwartz, Bridges to the Future Coordinator. To learn more about this unique program, click here.

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