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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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Spreading Awareness Through Dialogue

CrystalCrystal Rondeau and her family are a cornerstone of the Muscular Dystrophy Canada community in Winnipeg, Manitoba. She is 25 years old, and is living with Spinal Muscular Atrophy Type 2.

Over the years, Crystal has not only lived with this severe muscle weakening and wasting condition, but has also fought cancer. She  began to use her story to help others understand disability, and disspell disability stereotypes.

Crystal’s presentations began when she was 16 years old, when a teacher asked her to make a slideshow about her life. At this point, Crystal had been in the hospital after undergoing a tracheotomy and described herself as going through depression and very suicidal. The slideshow provided an opportunity for distraction, so she got to work on her laptop and started typing.

‘I Have a Brain That Works… In a Body That Doesn’t.’

Now after almost 10 years of sharing her life and experiences with classmates, school groups, business and community groups, Crystal has it down to a science. She gives background information on what muscular dystrophy is, and the specifics of SMA and its varying types. Crystal paints a picture of what it is like to receive a diagnosis, prognosis, surgeries, and symptoms.

After discussing symptoms with the group, Crystal leads the group in a breathing exercise to simulate the difficulties those affected by muscular dystrophy have with breathing. Attendees breathe through a straw, and then evaluate how it felt. They then move on to breathing through the straw while doing jumping jacks, and re-evaluate. “The impact of the exercise is real. You can see it on their faces. It really shows them how it is for me to breathe,” she says. “The reality of the disorder hits them – that even breathing is such a struggle.”

Once the exercise is complete, Crystal turns to sharing personal stories about living with SMA, her cancer, and issues with being bullied.

“I do my best to explain exactly how SMA works; I explain the genetic in terms that are simple. I also tell them everything I need help with, right down to having someone help shave me. In regards to cancer, I do my best to show them how it changes your outlook on life. I witnessed so many children die and when they realize that it really happens, they take the time to think about it. As for bullying, I tell them exactly what has been said to me, and explain how it specifically  affected me. However, I also express that because of the bullying and challenges I’ve faced, I am a stronger person. “

She shows them photos, and tells attendees her dreams and goals – then it’s question period. Crystal does not shy away from anything asked. “Honestly, it’s my favourite part of the presentation. I find it very interesting to hear what they are thinking, and what they want to learn more about.”

“Doing the presentations is very fulfilling for me, it makes me happy. You can tell that they’re really impacted by my life and have enjoyed me being there,” says Crystal.

“I hope that people leave with a different view on life, and a different perspective on people who live with disabilities.”

If you would like to get in contact with Crystal, please contact our Winnipeg Community Office at 204-233-0022 ext. 2 or at averill.stephenson@muscle.ca

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50 Years of Commitment

Alan

For the last half century, Alan Bartley has been working tirelessly to fight muscular dystrophy.  When he first joined the Winnipeg Fire Department, he was introduced to some individuals affected by neuromuscular disorders – as Fire Fighters are the largest supporters of Muscular Dystrophy Canada – and he hasn’t wavered in his commitment to find a cure since.

Over the years, he has advocated and rallied behind hundreds of families. From legislative protests, to getting a group of Fire Fighters together to build a ramp at an individual’s home.  Alan is a face of Muscular Dystrophy Canada, along with families, staff, and Fire Fighters across Canada – not just in Manitoba.

Alan treats the fight against muscular dystrophy in much the same way he fought fires when he was on the job.  No one left behind.  We stay until the fire is out – or in this case, until a cure is found.  And his fire is definitely not out, yet!

For over a decade, Alan has co-chaired the Manitoba Chapter.  His many activities with the Chapter include donning the big red suit at their annual Christmas Party, advocating for individuals, supporting newly diagnosed families, and running fundraising events.  I think most families in Manitoba would be surprised to hear that Alan has no family history of the disease; just a strong personal connection and the motivation to go with it.

This past March, Alan spent a week sleeping in a drafty tent on the roof of a fire hall in Winnipeg.  He got a manicure and a pedicure, was up at 5 a.m. to talk to the media, and did some Zumba dancing.  All in a day’s work.  With the Rooftop Campout committee he helped us raise $50,000 in only four days!

If we add that to the over $600,000 that has been raised in Winnipeg over the last 50 years, we can see how much Alan’s influence and hard work has achieved.

Alan was recently honoured with the Courage to Inspire Award at the Prairies Fire Fighter/Chapter Conference in Edmonton in November.  The Award, given to individuals who have had an enduring relationship with Muscular Dystrophy Canada and exhibited exceptional contributions of either financial resources or time.  Alan Bartley’s 50 years of active volunteer work demonstrates an exceptional commitment to the cause and he was very moved when the room erupted into applause and a standing ovation to mark these five decades of hard work.

Alan will also be recognized for his volunteering legacy at the upcoming Winnipeg Fire Fighter Rooftop Campout.  On Wednesday, March 18th an afternoon shindig is planned in his honour at the Osborne Village Fire Hall (150 Osborne Street) both on the roof and a little closer to the ground.  All are welcome to attend!

On behalf of the families and individuals affected by neuromuscular disorders in our province (to whom you are a great hero), and from the hundreds of Fire Fighters you have mentored and inspired along the way – thank you for dedicating five decades to this cause.  We’ve appreciated every minute.

For details on the event, please click here (you can also donate online) or on Facebook click here.

_____________________________

Kristen Pachet is the Revenue Development Manager for Manitoba and Saskatchewan.

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