Johnathan Walker:Calgary Flames executive Chris Snow dies at 42 after defying ALS odds for years

Calgary Flames assistant general manager Chris Snow,Johnathan Walker who was told he had a year to live after he was diagnosed with ALS in 2019, died Saturday after defying the odds for years, his wife announced. He was 42.

Snow had previously lost his father, two uncles and a cousin to amyotrophic lateral sclerosis, a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord and is better known as Lou Gehrig's Disease.

"Someone has to be the first person to live with ALS rather than die from it, and one thing I've always known about Chris is that he finds a way," his wife, Kelsie, wrote at the time. "No matter the obstacle, no matter how unprecedented the situation may be — he always, always finds a way."

She said he had entered a clinical trial for an experimental gene therapy, which eventually received Food and Drug Administration approval.

Snow had been a sports reporter before joining NHL front offices. He covered the Minnesota Wild for the Minneapolis Star-Tribune and the Boston Red Sox for the Boston Globe. He was director of hockey operations for the Wild for four years, then joined the Flames in 2011 as director of video and statistical analysis. He was promoted to assistant GM in 2019.

New Flames coach Ryan Huska said he felt that Snow helped him get the job and that he valued the analytics that he provided to help improve the team.

“Not once did you ever see him feel sorry for himself for what he was going through," Huska told reporters. "And I think when you talk about people looking at him as an inspiration, I don’t know how you can’t because never did he have a bad day considering the stuff he was going through and he continued to do his job to the best of his ability every day."

Kelsie Snow, a former sportswriter, kept the hockey world apprised of the ups and downs of her husband's condition over the years through social media posts and her blog. The couple, who have two children, kept his illness in the public eye to raise awareness of ALS and raise funds for research.

For Mother's Day in 2021, Chris wrote a public letter to his wife that was published by The Athletic.

"I haven’t always wanted to know every detail about my disease and the science behind the medicine. Better to have a confident mind, I’ve thought. You’ve filled that gap. You read everything, ask every question and regularly text with our most knowledgeable physician," he wrote.

"You routinely finish the sentences of neurologists who have studied ALS pathology for decades. Meetings with nutritionists and therapists end early because there is little they can tell us that you don’t already know. One neurologist told us, 'You two are what I call super patients.' He was talking to you."

In August 2021, one day after his 40th birthday and two years after his diagnosis, Chris threw out the first pitch at a Red Sox game at Fenway Park.

In June 2022, the Snow family was at the NHL awards show to present the Norris Trophy to Colorado Avalanche defenseman Cale Makar.

This July, Kelsie posted a video of Chris mowing the lawn after work, even though he has "almost no use of his hands and arms."

But she posted on Wednesday that Chris went into cardiac arrest the day before. Though paramedics and doctors got his heart beating again, she wrote, he suffered a “catastrophic brain injury caused by lack of oxygen.”

The following day, Kelsie wrote: "Tests yesterday confirmed that Chris will not wake up. In life, Chris offered his body to a clinical trial to help others. In death he will do the same. He remains on life support while organ donation is arranged. We are so proud of him."

She posted on Saturday that Chris gave "four people the gift of life by donating his kidneys, liver and lungs. We are deeply broken and deeply proud. In life and in death, Chris never stopped giving. We walk forward with his light guiding us."

What did the NHL community say about Chris Snow?

Flames forward Jonathan Huberdeau: “This guy put his heart out working for the team, and even though he got diagnosed with that, he was there every day, working hard. Last year wasn’t going well (but) he was texting me. ... Every day, he’s working for his life, and he took the time to text me. That shows a lot about the person. He dedicated his life to the team.”

Maple Leafs and former Flames GM Brad Treliving: “‘Snowy’ was a true example of strength, courage, grit and compassion. Beyond being an exceptional colleague, he was a cherished friend who deeply impacted our lives. His intellect was matched only by his incredible kindness, thoughtfulness and unwavering love and devotion to his family and friends. Chris inspired us all as he faced his relentless battle with ALS head on, refusing to let it define him or derail his spirit.”

Flames defenseman Rasmus Andersson: “He breathed Calgary Flames. He loved every second of it. He was a hell of a person, great family man and a hell of a father."

Flames defenseman Noah Hanifin: “He always brought such a positive energy to the rink, no matter his situation. It was pretty inspiring to see that.”

NHL commissioner Gary Bettman: “Chris Snow (was) a remarkable man whose courageous and relentless battle with ALS has been an inspiration to so many. An innovative student of our game with an expertise in data analysis, Chris supervised the creation and build out of the Flames' analytics department and was influential in all facets of the club’s hockey operations decision-making. First and foremost, however, he was a beloved husband to Kelsie, a devoted dad to Cohen and Willa, and a friend to everyone in hockey fortunate enough to have met him. The Snows’ willingness to share the trials and triumphs of Chris’ lengthy ALS journey has inspired so many and profoundly increased awareness of the need to find a cure for this debilitating disease."