Diagnosed with amyotrophic lateral sclerosis in 2019, Chris Snow understandably didn’t think he’d have long to live. In his family, ALS has been swift and unforgiving. His father and two uncles died within eight months of learning they had what is known as Lou Gehrig’s Disease.
With tenacity, luck, and a clinical trial for treatment, Mr. Snow kept going for four years, outliving his doctors’ cautious prediction of a year at best. He even threw out the ceremonial first pitch at Fenway Park on his 40th birthday, in August 2021.
“It’s a homecoming and it’s a triumph,” he said that day. “To do this, to walk in here, it feels so, so good.”
Mr. Snow, a vice president and assistant general manager of the NHL’s Calgary Flames who formerly covered the Red Sox for the Boston Globe, was 42 when he died Saturday.
“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,” wrote his wife, Kelsie, on Saturday night in a post on X, the platform formerly known as Twitter. “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 announced Wednesday on X that he had gone into cardiac arrest and suffered a catastrophic brain injury because of the lack of oxygen until medical personnel were able to get his heart beating.
“My chest feels cracked open and hollowed out,” she wrote Wednesday. “Chris is the most beautiful, brilliant person I’ll ever know and doing life without him feels untenable. Hug your people.”
At Friday night’s exhibition game, the Flames praised the family’s extraordinary devotion to fund-raising during Mr. Snow’s illness. The #SnowyStrong campaign, “launched in 2020, has raised more than $575,000 to directly fund ALS research and new treatments,” and other efforts have raised even more, the team said in a video tribute played for fans before the game against the Edmonton Oilers.
“In his countless public appearances, and willingness to share his story, he helped bring global awareness to the fight against ALS,” the team added. “Through his journey, Chris became a true inspiration to all who knew him and an incredible advocate for everyone affected by this awful disease.”
On her podcast and blog, Kelsie had tracked his progress for those around the world.
“Chris is a beacon of hope for the entire ALS community,” she told the Globe in 2021, when her husband made his Fenway appearance.
With “a smile that, even now in his hardest hours, could outshine a glimmering midnight desert sky,” as the Globe’s Kevin Paul Dupont wrote in 2020, Mr. Snow brought a warm, welcoming presence to his work as a writer and then an assistant general manager.
With that same charisma, he inspired others as he held on through treatment for ALS, and was profiled on HBO’s “Real Sports With Bryant Gumbel” in March.
As a Globe baseball writer, Mr. Snow wove cheeky local references into what he saw unfold.
When the Red Sox lost on the road in May 2006 to the New York Yankees with Curt Schilling on the mound, Mr. Snow reached back home for an appropriate image.
Facing Alex Rodriguez at the plate, and behind in the count, Schilling “threw the kind of pitch you pay 75 cents for on Route 1 in Saugus.” Rodriguez turned the fastball into his 436th career home run.
Partly because Mr. Snow’s work with an NHL team made him a public figure, and largely because of Kelsie’s writing and podcasting, their entire family’s life during the past four years has offered inspiration to those with ALS, their families, and others coping with grief and serious illnesses.
“Hope meant outrunning ALS,” wrote Kelsie in a January blog entry titled “What Remains.”
The extraordinary sadness and the everydayness of life blended as she told their two children that Mr. Snow was on life support, a scene that no doubt resonated with countless families facing terminal diagnoses.
“We cried together and held each other,” Kelsie wrote of Cohen and Willa. “They asked questions and then they brushed their teeth and packed their backpacks and got in the car to drive to school.”
On the way, she glanced out the car window.
“ ‘Oh,’ I said, ‘look how beautiful the sky is.’ And then, maybe for them, definitely for myself, I added, ‘The world is still beautiful, even when it’s sad.’ ”
Love in the press box
Christopher Snow was born in 1981, and grew up in Melrose, the son of Robert and Linda Snow. Linda, who had volunteered in schools and for civic groups, died in 2012.
Mr. Snow graduated from Malden Catholic High School and then received dual degrees in magazine journalism and policy studies from Syracuse University. It didn’t take him long to return to Boston to write about the Red Sox.
During his Globe tenure, Mr. Snow was an “outstanding” beat writer, recalled longtime Red Sox executive Brian O’Halloran.
“I reconnected with him in recent years after his diagnosis. We had great baseball conversations as recently as spring training in Fort Myers this year,” O’Halloran said. “He and his wife, Kelsie, are incredible people. The courage, openness, and vulnerability they have shown through Chris’s ordeal have been inspiring.”
Mr. Snow was “a top-notch Red Sox beat reporter,” Dupont wrote in 2020, but he left journalism in his mid 20s for an operations position with the NHL’s Minnesota Wild.
In 2011, he moved to the Calgary Flames as director of video and statistical analysis, later becoming vice president of data analytics and assistant general manager. “His impact on the organization was immeasurable,” the team said in its tribute video.
Mr. Snow and Kelsie had become a couple while covering sports events.
“I didn’t meet my husband in the stands or the beer line or during a shared smile over ‘Sweet Caroline.’ Instead, we fell in love in the press box,” Kelsie wrote for the Globe in September 2021.
At 23, he had just become the Globe’s beat writer covering the Red Sox. Kelsie Smith was a 21-year-old intern in the sports department, who went on to write for the Globe, the Los Angeles Times, and the St. Paul Pioneer Press.
“The summer I met Chris was the best one of my life,” she wrote.
First she fell in love with Boston, “and then I fell in love with Chris. He was funny and passionate, he laughed easily, and he made even a mundane outing seem like the most exciting event in the world.”
They married two years later, in 2007, and eventually settled into raising their children in Canada.
“And then came June 10 and June 17 in 2019,” Mr. Snow wrote for The Athletic in 2021, a tribute essay for Kelsie on Mother’s Day. Initially, doctors said, “ ‘This is pointing toward a form of motor neuron disease.’ And then, ‘You are in the early stages of ALS.’ “
With Kelsie by his side, he asked how long he had to live: “ ‘A year,’ the doctor said. You cried.”
In the essay, Mr. Snow credited Kelsie with supporting and sustaining him.
“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,” he wrote.
“You read everything, ask every question and regularly text with our most knowledgeable physician. 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.”
‘The ultimate gut punch’
For two former sportswriters whose professional lives had been filled with statistics, ALS offered new realms of numbers.
Among about 20,000 people in North America diagnosed with the disease, a mere 400 have been identified as having the mutated SOD1 gene, said Mr. Snow, who was among them.
His father, Robert A. Snow, was 68 when he died in 2018, not long after being diagnosed with ALS. An educator — and, in semi-retirement, a writer for NHL.com — Bob Snow had been a school administrator whose work involved schools in Malden, Melrose, and Somerville.
For Chris Snow, symptoms began in 2019 when the fingers of his right hand didn’t respond the way he wanted when he was working out in a hotel during the Stanley Cup playoffs.
Medical tests ruled out less intrusive diagnoses and doctors finally suggested that like his relatives, Mr. Snow had ALS. His father had died just several months before his symptoms appeared.
It was “the ultimate gut punch,” he told the Globe in 2020. “Like I said to Kelsie then, and I’ve said many times, this is a death sentence.”
At his doctor’s suggestion, he joined Dr. Lorne Zinman’s clinical trial in Toronto as he researched the SOD1 gene. Mr. Snow recalled that when he and Kelsie met Zinman, “He looked at us and said, ‘We’re here to make history.’ “
In addition to his wife and two children, Mr. Snow leaves his sister, Colleen. A complete list of survivors and plans for a memorial gathering were not immediately available.
For Chris and Kelsie Snow, ALS was a painful path they traveled together for four years.
“You’ve told the world my story with brutal honesty and genuine hope. You are the best writer I know,” he wrote for The Athletic. “Someday your blog will be a book. You started a podcast on grief, a topic most of us avoid. You ask me if you are any good at any of this while at the same time you get notes of thanks.”
The illness that rewrote the lives of two writers has “taken the ease of those early days in Boston and Minnesota. But it has given, too,” Mr. Snow wrote in his tribute to Kelsie’s courage and stamina and talent. “It has given the world a chance to know you. To realize your immense talent and heart. For that, and for you, I am grateful.”
On her website, Kelsie wrote that while ALS shortened their time together, the illness couldn’t touch the most essential part of what they shared.
“What remains of the life we thought we’d have? The most elemental part — you.”
Globe staff writer Peter Abraham contributed to this report.
Bryan Marquard can be reached at firstname.lastname@example.org.