Walk to End ALS smashes fundraising goal

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This article was published 13/06/2022 (1425 days ago), so information in it may no longer be current.

This year’s Brandon Walk to End ALS brought in more than three times what organizers had set as a fundraising target.

Around 30 people gathered at the Riverbank Discovery Centre on Saturday morning for the Walk to End ALS, a fundraiser and public information event for the ALS Society of Manitoba. The five-kilometre walk around the grounds was primarily to raise money for the society to help it deliver client services, such as purchasing equipment to lend to people with ALS, counselling and research.

It was also a chance for walkers and their families to honour those still living with the neurodegenerative disease and memorialize those lost. Several participants came bearing the names and pictures of family and friends who had died from ALS. It was a family-friendly event, with children allowed and encouraged to come along.

To make the fundraising more fun, raffle tickets were sold for prize packages donated by sponsors.

The ALS Society of Manitoba couldn’t have asked for much more than the love and sense of family from the participants, said Diana Rasmussen, executive director and client services co-ordinator.

By the time the walk started, walkers had raised $8,000 through online fundraising. The target goal was $2,500.

“It’s a fantastic surprise and shows how much support the society and families living with ALS have in Brandon,” she said. “That’s not counting donations still coming in and money being raised through the prize draws.”

About 60 per cent of the money raised stays in Manitoba to help people living with ALS, Rasmussen said, with 40 per cent going to research to find a cure.

Because of the debilitating nature of ALS, geography is an important factor for people with the disease, so the society makes it easier to help families in various areas by having separate walks, Rasmussen said.

While it was geared toward being a fun event, Rasmussen said the walk is meant to help put an end to a serious and always fatal disease. Equipment needed to help people with ALS live comfortable lives is expensive, being made even more expensive by inflation. For example, a porch lift to help people enter and leave their homes costs between $7,000 and $8,000. Specialized cushions for people to sit on cost around $500 to $700. These are all normal things people need, plus other equipment to help people so everything from cooking, to navigating stairs and even go to the bathroom.

The society helps people get access to equipment, as well as counselling. The society also has the ALS House in Winnipeg, which provides 24-7 care and support for people living with the disease.

All of these services need financial supports, she said, and events like this help keep money coming to them so the ALS Society can offer services to everyone in the province. Since the pandemic, ALS diagnoses have increased as well, especially in Brandon. Rasmussen said she couldn’t say why, but it shows the need for services won’t be going away anytime soon.

The Brandon walk was for all families dealing with ALS, but organizer Taryn Tuttle said she is doing it in memory of her father, who died in 2018, just four weeks after he was diagnosed with ALS.

Since then, she had been in touch with the society and was told it didn’t have a walk co-ordinator for Brandon. If they wanted to walk, they would have to drive to Winnipeg.

“I offered to start doing one every year in Brandon because there are quite a few people in Westman who are living with ALS,” she said. “This is a fatal disease, so there’s a lot of support people need for it. Fundraising can help out with a lot of things.”

She added when her father died, she thought ALS was a rare disease. Working with the society showed her it is much more common than she realized. Along with online support through donations and registrations for the walk, Tuttle said they always have strong support at live events.

One family that made up a large portion of the walkers. Siblings, relatives and friends of as well as Jacquie Harmon, who is still battling the disease, all headed out as she waited by the society’s booth. Diagnosed in 2019, the disease has left her in a wheelchair, unable to speak.

Her husband, Jim, said he knows she is relieved to see so many people doing what they can to help fight the disease.

“As Diana said, something must be done. The price of things are going up and we need help,” he said. “It’s great to see so many out here and knowing this raised way more than expected.”

ALS stands for Amyotrophic Lateral Sclerosis and is sometimes more commonly known as Lou Gehrig’s disease, named after the New York Yankees hall of famer who was diagnosed with it. According to the society’s website, ALS is a rapidly progressive and fatal neuromuscular disease that involves degeneration of a select group of nerve cells and pathways (motor neurons) in the brain and spinal cord. This loss of motor neurons leads to progressive paralysis of the voluntary muscles.

The heart is not a voluntary muscle, and therefore it remains unaffected by the disease. However, since breathing is controlled voluntarily by the chest muscles, death usually occurs when the chest muscles are no longer able to help the lungs get enough oxygen.

There is normally no impairment of the brain, sight, touch, hearing or smell.

For the most part, the battle is short, with 80 per cent of people losing their lives within two to five years of diagnosis. While between 10 and 20 per cent of people may live 10 years or more, others end up lasting only a few months. Research is being conducted in areas relating to genetic predispositions, viral or infectious agents, environmental toxins and immunological changes.

Symptoms and the order in which they occur vary from one person to another. Every case of ALS is unique.

In 85 per cent of cases, ALS effects the lower portion of the spinal cord first. In these cases, the first signs are muscle weakness, cramps and weakened reflexes in the arms and legs.

People can still donate to the Brandon Walk to End ALS. Anyone wishing to donate to Brandon’s efforts can email heavensjade@hotmail.com.

The next walk will be in Winnipeg on June 18 at Assiniboine Park. People can still register, fundraise and donate for this walk by contacting The ALS Society of Manitoba at alsmb.ca/

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