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Walking together for Muscular Dystrophy research

Walking together for Muscular Dystrophy research

Event coordinators Brigitte Fleury and MD advocate Jenna Keindel issue speeches before the walk.
The Equity

J.D. Potié

GATINEAU Sept. 14, 2019

Around 125 people gathered at the Père Arthur-Guertin Community Centre in Gatineau on Saturday morning to walk in support of . . .

a good cause, during the 12th annual Outaouais Walk for Muscular Dystrophy (MD).

Organized by Muscular Dystrophy Canada, the goal of the walk was to raise funds for Muscular Dystrophy research in order to support families affected by the illness and the researchers working hard to find a cure and to raise awareness for those who aren’t familiar with what’s all about.

Scheduled for an 11 a.m. start, attendees started flooding the inside of the community centre at around 10:30 a.m. where a number of representatives of various contributing sponsors stood behind kiosks.

Behind one of the tables, volunteer Alex Brisson sold bright orange name tags for participants to wear after getting registered as well as a wide collection of other MD research awareness merchandise.

Live on location, a DJ blasted tunes through the loud speakers on site to keep the folks pumped up for the big walk.

Lightening the atmosphere even more, the event’s mascot, a polar bear named Dystro, was on hand waving at attendees and giving high fives and hugs before joining them for the walk.

Prior to hitting the road, the large crowd of participants gathered in front of the starting line just outside the community centre, as some of the event’s coordinators Brigitte Fleury, André Soucie and Bristol MD advocate Jenna Keindel delivered brief speeches, thanking everyone for contributing to the cause.

After the speeches, a local child living with MD Julien Bertrand stepped on stage accompanied by his siblings Jade, Eve and Myriam as well as his parents Jacques and Valerie to share his inspirational story of struggle, courage and perseverance before cutting up the red ribbon to officially kick off the walk.

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Just before taking off, participants got warmed up by doing the YMCA dance in unison as the classic song emanated from the sound system on hand.

Taking place just after last year’s devastating tornadoes, the path for the last walk was considerably reduced. This year, the path consisted of a five-plus kilometre trek around Lac Leamy.

“It’s a big circle,” said Keindel.

While the walk is typically held on a Sunday, Keindel said that the committee scheduled this year’s walk on a Saturday with hopes of attracting more people.

According to Keindel, all donations, big or small, can go a very long way towards helping out MD victims and their families, whether it’s purchasing hospital beds, brand-new wheel chairs or discovering new forms of advanced medication.

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“A hospital bed for someone who can’t get up out of bed or that can’t turn in bed is very important,” she said. “So, that they can actually change their positions in bed to lift their legs or sit forward a little bit, especially in times where people have a cold.”

“When you’re trying to cough and you can’t move to sit up, it’s very appreciative to have that bed that can help you breathe,” she added. “Otherwise, you just don’t get better.”

In 2018, Keindel was awarded with the Provincial Volunteer of the Year award for courage and inspiration. This year, she won the same award on the national stage.

A rare genetic disease, more prevalent with young people between the ages of five and 25 years old, MD involves the gradual decline and erosion of muscle tissue.

Despite being confined to a wheelchair, Keindel doesn’t let her physical limitations prevent or discourage her from making noticeable positive impacts on the world.

Still working a full-time job while travelling from one city to the next to attend MD research conferences, Keindel admitted that her lifestyle can get fairly busy.

Nonetheless, knowing what it’s like to live with the illness from a first-hand perspective, she feels like it’s her duty to take matters in her own hands to make a difference for those suffering from MD.

“I just try to be instrumental in being an advocate for MD because when you have a rare disease that not a lot of people have and there’s absolutely not treatment and no cure for a disease and everything keeps getting worse, it is so discouraging,” she said.

“I’m a firm believer that nothing just happens,” she added. “You can’t just let stuff happen, so you need to go out and make things better. If you sit at home and are sad about stuff, that doesn’t really get you any further ahead. In fact, then you have depression to deal with.”

All in all, she’s extremely thankful for the help she’s received from her loved ones making her involvement as an MD advocate possible.

“Family and friends are the biggest support to me ever,” she said. “Just knowing that people go above and beyond for me, makes me happy too.”

For Keindel, the annual walk is always a rewarding experience as it’s an opportunity for her to connect with the tight-knit community of victims of the disease as well as their families.

“It’s one of the only times per year that we can actually see everybody in the area that is affected by Muscular Dystrophy or has a loved one affected by Muscular Dystrophy,” she said. “It’s kind of like a fun family reunion.”

At the end of the walk, organizers announced that the event had raised a grand total of $26,000 from registration fees, sponsors and exterior donations. According Muscular Dystrophy Canada’s their website, funds are still consistently flowing in.



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