Heather MacFayden of Langford has watched a friend lose her father to ALS and seen other families suffer from the effects of the disease on their loved ones. She and 11 other cyclists are riding in their honour in the ALS Cycle of Hope this summer.

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When her family was called together for an announcement, Beth Murray knew the news wasn’t good. The “bomb dropped,” she said.

Murray’s sister, Donna, had been diagnosed with amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig’s disease and doctors gave her three to five years to live.

Despite the devastating news, it gave Murray a glimmer of hope. It wasn’t cancer, the disease that took both her mother and father, she thought to herself. ‘There might be time, there might be hope.’ One morning in 2013, a year after diagnosis, that hope disappeared when Donna passed.

“This (disease) really strikes out of the blue and it can happen to anyone. She was seemingly a healthy active energetic person,” Murray said. “She was a dear friend and so full of life. She was an amazing person who I miss tremendously.”

The motor neuron disease causes muscle atrophy leading to difficulty speaking, swallowing and eating, and eventually difficulty breathing. There is no known cure.

“Her body was changing and what she could do one day, she couldn’t necessarily do the next day,” Murray said. “At the beginning it was things like getting dressed,” the Oak Bay resident said. “Imagine what it is like not to be able to use your hands and what that entails, I think we take for granted what we are able to do.”

ALS continued to atrophy her sister’s muscles, stealing music from her when her hands became so weak she could no longer strum her guitar. Her love of biking was eroded as her arms gave out and she could no longer support her own weight. Eventually her love of the outdoors was taken away, when her muscles were so weak she was in a constant state of exhaustion and even being driven to the park was too much. Over time, her lungs lost the strength to push the carbon dioxide out of her body, and one morning Donna didn’t wake up.

It is in her memory Murray climbs on her bike three days a week with the ALS Cycle of Hope. The team of 12 cyclists plan to ride more than 500 kilometres from Kamloops to Keremeos between Aug. 6 and 13, raising funds and awareness for a disease many, including team member Heather MacFayden of Langford, say still flies under the radar.

“The more I learned more about ALS, the more I realize how unknown it is,” MacFadyen said. “It is not a high-profile disease yet, it is very cruel. It needs to have some awareness and people need to know about it. I have heard recently through different interviews that the research has made strides … It is really encouraging and that makes all of what we are doing really worthwhile.”

Now in its third year, the ride has expanded to 12 riders from five in 2012 and gone from raising $5,000 to $42,000 in year 2. The goal this year is to raise $50,000 towards ALS research and the provision of a mechanical wheelchair for local patients.

MacFadyen watched a friend gradually lose her father to the disease.

“Losing someone in such a devastating way as ALS, where they get stripped of their dignity and lose everything, and seeing (my friend) go through that, was heart wrenching,” she said. “You want to make everything better for them and you can only do what you can do – be their advocate and their voice after the fact.”

And so both MacFayden and Murray ride, raising awareness and funds along the way. That starts with the Oodles of Noodles dinner/dance and silent auction June 7 at the Edelweiss Club in Victoria, and continues with a community ride on Fathers Day June 15.

“I feel Donna would be riding with us if she could have been,” Murray said. “She is the reason that I am doing it. I think of her every time I get on a bike. I feel like I have a hole in my heart … It is a way for me to use my grieving energy into something positive to hopefully make a different for other families going through this.”

For more information visit cycleofhope.ca.

alim@vicnews.com

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