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While most people recognize ALS solely from the Ice Bucket Challenge, the immunity disease is not nearly as lighthearted as the challenge. In fact, the disease is a fatal motor neuron disease, characterized by progressive degeneration of nerve cells in the spinal cord and brain. ALS affects voluntary control of arms and legs and leads to trouble breathing. Living with ALS is about as challenging as living can get. No one knows this better than the late Chris Snow and his loved ones.

Indeed, the former Assistant general manager of the Calgary Flames has passed away. He died aged 42 in Calgary, Alberta, after having battled ALS since 2019.

Raising Awareness for ALS

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The news of Snow’s demise was revealed by his wife, Kelsie, on Saturday. She tweeted about the death, adding that he donated his organs so that four people could live on. “In life and in death, Chris never stopped giving. We walk forward with his light guiding us,” Kelsie wrote. Snow’s demise was rather inevitable as he had gone into cardiac arrest after suffering a “catastrophic brain injury” on Wednesday.

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Snow was diagnosed with ALS in 2019. At the time, doctors had given him just one year to live. Somehow, Snow managed to hold on for much longer, documenting his illness with his wife. The couple also started raising awareness about ALS while simultaneously raising money for research. Snow’s connection with ALS, however, was evident. Just months ago, his father had succumbed to the disease. Meanwhile, Chris had also lost an uncle and a cousin to ALS.

After his diagnosis, Snow practically became a spokesperson for ALS. He brought to light that ALS was curable but simply underfunded.  “It’s underfunded because so few people have it,” he said. He even launched a podcast with his wife called ‘Sorry, I’m Sad,’ calling guests to share their stories of loss and grief. Meanwhile, Mrs. Snow did her utmost to educate people via her blog.

Hope Is Everything

While under experimental trial, Snow’s condition improved. Suddenly, there was hope. Kelsie documented the impact of hope in her trying circumstances. She wrote about how hope made her family appreciate every breath they took and every conversation they had. “Because hope, it turns out, is everything,” she wrote.

Despite his worsening condition, Snow made public appearances and took every opportunity to shed light on the disease. He even threw out the first pitch at Fenway Park before a Boston Red Sox game in 2021. Upon Snow’s demise, Kelsie took to Twitter, writing, “My chest feels cracked open and hollowed out. Doing life without him feels untenable. Hug your people.”

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Kelsie Snow’s last blog post on January 31 was addressed, in part, to her husband. Here’s how it read:

“Here is the truth: you’re sad. We’re scared. This is lonely. Many days it feels like there is no light at the end of the tunnel. There is no winning against this disease. There is only learning how to live with all the loss.”

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