For the second year in a row, the Tenaquip Foundation Walk for Muscular Dystrophy will be a virtual one. The annual event, hosted by Muscular Dystrophy Canada, brings the neuromuscular disorder community together to raise much needed funds and awareness for Canadians affected by the disease.
Muscular Dystrophy is a term used to describe a group of more than 160 different neuromuscular disorders that cause deterioration of muscle strength. Over 50,000 Canadians live with the disorder for which there currently is no cure. Symptoms can range from trouble walking, frequent falls, muscle pain and stiffness. It can affect anyone from teenagers to adults.
Since the COVID-19 pandemic hit in March 2020, the morale of their clients has been an ongoing concern for the team at Muscular Dystrophy Canada. Adding to challenges for those with muscular dystrophy is that causes, symptoms and severity vary among individuals suffering with the disease.
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“It’s been difficult for sure…living with a neuromuscular disorder already poses some significant challenges; living through COVID-19 and a neuromuscular disorder is very difficult,” says Stacey Lintern, CEO of Muscular Dystrophy Canada. “One of the common things with neuromuscular disorders is that there is a lot of risk around respiratory and of course, we know this particular virus causes respiratory distress so it has been significantly challenging for our community through this time.”
Muscular Dystrophy Canada has created additional services and programs for its clients to ensure they feel connected during the pandemic. These resources not only provide information on neuromuscular disorders but also funding, emotional support and education for family and caregivers.
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New Brunswick resident Richard Steeves was just 21-years-old when he was diagnosed with muscular dystrophy. He understands that fundraising efforts like the Walk for Muscular Dystrophy can help provide those living with neuromuscular disorders additional financial support.
“For the average person, insurance will cover 80 per cent, but that still leaves a big chunk of money and that’s where some of the funds that are raised goes to help for that,” he said.
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Last year’s walk event was a success for Muscular Dystrophy Canada, with over 200 teams participating and raising over $770,000 — surpassing their revenue goal.
The organization hopes to have another successful event as revenues for Muscular Dystrophy Canada were down 60 per cent for the early part of 2020. Lintern says there is still a decline in revenue at this time but the support from their clients and supporters keeps them moving ahead.
“We’ve been able to kind of pivot and adjust and cope the best way that we can,” Lintern says. “So we continue to support our community…investing in research, offering these critical programs and services…this walk will be a key significant revenue source for our initiatives.”
Funds raised from last year’s Walk for Muscular Dystrophy have already made an impact. For the first time ever, Muscular Dystrophy Canada is reporting treatments available for the neuromuscular community, particularly for those with spinal muscular atrophy. Lintern says access to these treatments and medications has been life changing. “There’s additional medications and treatments that are available for other neuromuscular disorder types so that is really a positive focus for our community at this time,” she says.
The Tenaquip Foundation Walk for Muscular Dystrophy takes place Saturday, June 19. Interested participants can register for the event by visiting the Tenaquip Foundation Walk for Muscular Dystrophy website.
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