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INTERNATIONAL DAY OF PERSONS WITH DISABILITIES: Lana on Goal #9

unsustainabledevelopmentgoals_brand-01The third of December marks the United Nations International Day of Persons with Disabilities. This year’s theme is the 17 Sustainable Development Goals, which were adopted by countries all over the world on September 25th, 2015. These goals look to move towards the ending of  poverty, protecting the planet, and ensuring prosperity for all as part of a new sustainable development agenda.

We asked our friend and colleague Lana Miley to speak to one of the Sustainable Development Goals and tell us what it means to her as someone who lives with a disability. Lana chose goal number nine: Industry, innovation and infrastructure. Here’s what she had to say about it:

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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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Rock on for a cure!

Crew and his painted rocks

Crew and his painted rocks

Ethan (13) and Crew (8) Poirier are no strangers to raising money to support the work of Muscular Dystrophy Canada. They have accompanied the Anderson family to each and every Brandon Walk for Muscular Dystrophy since the Walk started in the community back in 2010. They got involved because of their friend Andrea Anderson who was an inspiration to all that met her. Sadly, as a result of complications with Limb Girdle Muscular Dystrophy, Andrea passed away on April 11, 2015. Ethan and Chase have remained active and involved in honour of their friend Andrea.

The boys have found unique ways to fundraise including hosting an annual Valentines’ Day fundraising party with their grandparents, creating and selling rainbow loom bracelets, preparing and selling sold baked goods at a garage sale, and more. This year, Crew decided that he wanted to raise money for the Walk by selling beautifully painted rocks that he made over the summer – and his contribution helped Team Andrea raise over $1,500. Crew is already planning his rock sales for next summer and plans to expand to create and sell even more rocks!

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What is the National Fire Fighter Relations Committee?

nffrcThe National Fire Fighter Relations Committee (NFFRC) is an advisory committee to the Board of Directors of Muscular Dystrophy Canada.

The committee is comprised of up to twelve voting members who represent the fire service across Canada. Members of the committee are chosen on a provincial basis to represent the Fire Fighters in that province on the NFFRC.

The chair of the NFFRC is automatically given a seat on the Board of Directors where there are, currently, three additional directors who serve, or have served, in the fire service. This demonstrates the value that Muscular Dystrophy Canada places in the support received from Fire Fighters since 1954.

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Fabulous Fundraising: How One Team Raised $72,000

 

erinkenstoryFourteen-year-old Erin Novakowski is a typical teenaged girl who really loves Starbucks, her phone and shopping. She also happens to have a form of muscular dystrophy called spinal muscular atrophy (SMA) type II.

“Although I never let my disability stop me from doing the things I love, I use lots of assistive equipment to help me throughout the day,” she explains. “And sure, people stare at me, but I just like to think it’s because I’m fabulous and they want to know where I got my pants.”

Erin’s infectious enthusiasm for life is one of the things that her friend Nicole loves about her. “She’s the girl who knows how to make the best out of any situation,” she says. And while Erin and Nicole’s relationship began because Nicole works part-time as Erin’s care aid, their bond has deepened well past the usual hallmarks of friendship, leaving the two of them feeling like sisters.

 

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