Chris Snow, the assistant general manager for the Calgary Flames of the N.H.L., who after being diagnosed in 2019 with amyotrophic lateral sclerosis, or A.L.S., became a prominent advocate for victims of the fatal disease, died on Saturday in Calgary, Alberta. He was 42.
Kelsie Snow, his wife, announced his death on Saturday night in a post on X, the platform formerly known as Twitter.
“Today we hugged Chris for the last time and said goodbye as he went to give four people the gift of life by donating his kidneys, liver and lungs,” she wrote. “We are deeply broken and deeply proud. In life and in death, Chris never stopped giving. We walk forward with his light guiding us.”
She had posted Wednesday on X that Mr. Snow had gone into cardiac arrest after suffering a “catastrophic brain injury.”
When he was diagnosed with the disease, doctors gave him a year to live. The disease ran in the Snow family: Just months earlier his father had died as a result of A.L.S. It also killed two of Mr. Snow’s uncles and a cousin.
But Mr. Snow held on for much longer than predicted, and in the years since, he and his wife documented their experiences and became advocates for other patients, promoting social media campaigns to raise awareness about the disease and raising money for research.
“A.L.S. is not an incurable disease,” Mr. Snow told the Canadian sports broadcaster Sportsnet in an interview soon after his diagnosis was revealed. “It’s an underfunded disease. And it’s underfunded because so few people have it.”
He took part in an experimental gene therapy trial after the diagnosis. Initially, he could not tell whether he was in a placebo group. But the atrophy caused by the disease slowed.
“In a no-hope situation, I suddenly had a chance,” Mr. Snow told Syracuse University, his alma mater, in an article on its website.
The Snows first began to chronicle life with A.L.S. on Ms. Snow’s blog and in social media posts, then later in a podcast called “Sorry, I’m Sad,” which invited others to share their stories of grief and loss.
“What happens then — when you go from no hope to real, true hope — is you feel high,” Ms. Snow wrote in one of her first blog posts after the diagnosis was publicly revealed. “You feel everything. You feel like you’ll never stop appreciating every single breath you take. You feel like life is brand-new. And you feel desperate — utterly desperate — to hold on to that hope, completely terrified of someone taking it away or diminishing it even a little.”
She added, “Because hope, it turns out, is everything.”
Mr. Snow’s condition worsened, but he continued to make public appearances, throwing out the first pitch at Fenway Park before a Boston Red Sox game in 2021. Before he was a hockey executive, Mr. Snow was a journalist and covered the Red Sox for The Boston Globe, which is where he met Ms. Snow, then Kelsie Smith, in 2005. She is a freelance writer.
The Snows displayed a steady stream of optimism and honesty about their home life, both the highs and the lows, through their public posts. “My chest feels cracked open and hollowed out,” Ms. Snow wrote this past week on X. “Doing life without him feels untenable. Hug your people.”
Christopher Michael Snow was born on Aug. 11, 1981, and grew up in Melrose, Mass. His father, Robert Snow, was an educator, and mother, Linda Snow, was a homemaker.
He graduated from Syracuse University in 2003 and was an intern at The Los Angeles Times before covering the Minnesota Wild of the N.H.L. for The Star Tribune of Minneapolis. He left journalism to become a front office executive for the Wild in 2006, a position he held until 2010. He was then hired by the Flames in a role specializing in statistical and video analysis, eventually working his way up to be assistant general manager in 2019, the year of his diagnosis.
In addition to his wife, Mr. Snow is survived by his children, Cohen, 12, and Willa, 9, and a sister, Colleen Snow.
Ms. Snow’s most recent blog post, published on Jan. 31, was partly addressed to her husband.
“Here is the truth: you’re sad. We’re scared,” she wrote. “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.”
