When Chris Snow ’03 was applying to college, his goal was to attend the best journalism school he could get into. The Melrose, Massachusetts, native knew he wanted to write about college athletics, so he narrowed his choices down to three reputable universities with prominent sports profiles: Syracuse, Northwestern and Boston. “I applied to Syracuse early decision, then started the Northwestern application,” he remembers. “I never even started the Boston University application, because Syracuse accepted me in December, and my mind was made up the moment I opened that envelope. I was so excited and relieved, because I knew how competitive it was to get into Newhouse.”
Snow became a standout student, earning dual degrees in magazine journalism through the S.I. Newhouse School of Public Communications and policy studies through the Maxwell School of Citizenship and Public Affairs. He quickly distinguished himself as a sports writer for The Daily Orange (The D.O.), the independent newspaper run by Syracuse University students that is considered among the best in the country. “The D.O. was as much my education as the University,” Snow says. “I probably spent 20 waking hours a week in a classroom and 40 hours at The D.O. offices or covering Syracuse football, basketball or lacrosse games.”
A Generation of Orange Writers
Snow describes those years at The Daily Orange as “an incredible moment in time” for student sports writers. “Pete Thamel, Dave Levinthal, Dave Curtis, Jeff Passan, Greg Bishop and Mike Rothstein were ahead of me by a year or two, and Eli Saslow, Chico Harlan, Adam Kilgore, Pete Iorizzo, Darryl Slater and Chris Carlson were a year behind me,” Snow recalls. “We taught each other. We helped each other secure internships at major daily newspapers. I can’t imagine a generation of university sports writers having more shared success than that group, in college and then professionally. I would not have the career and life I do today if I had gone anywhere but Syracuse.”
I would not have the career and life I do today if I had gone anywhere but Syracuse.
Snow’s professional trajectory after college gave him superstar status as a Newhouse graduate. Following an internship with the Los Angeles Times, he covered the Minnesota Wild National Hockey League beat for the Minneapolis Star Tribune, followed by a stint at The Boston Globe covering the Red Sox. It was there that he met met a Globe intern named Kelsie, whom he married in 2007. They returned to Minnesota together, where Chris made a leap from the newsroom to the professional hockey arena. He became director of hockey operations for the Minnesota Wild, and Kelsie covered the Minnesota Twins for five seasons. In 2011, they moved to Calgary, Canada, where Snow joined the NHL’s Calgary Flames as director of hockey analysis. He was later promoted to assistant general manager, his current position.
Devastation and Hope
The Snows’ first child, a son named Cohen, was born in 2011, followed by a daughter, Willa, in 2014. Kelsie loved being home with the children, and Chris loved his work in the competitive world of professional hockey, where the team was like a second family to them. Life was as perfect as it gets, until one day in June 2019, when a possible pinched nerve in Chris’ right hand turned out to be something infinitely more terrifying.
Snow was diagnosed with amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig’s Disease. ALS has a zero percent survival rate. He was 37 years old, and his life expectancy was 6-18 months.
“It was completely devastating,” Snow says. He knew exactly where the disease would take him, because he had an SOD1 mutation. That meant he had inherited a familial gene for the disease that had killed his father, two uncles, and 28-year-old cousin, who had all died within 18 months of being diagnosed.
But that SOD1 mutation turned out to be the tiny sliver of hope on which the family would hang their hopes for a future together. A doctor named Michael Benatar at the University of Miami, where he was diagnosed, told Snow and his wife about a clinical trial being conducted by Dr. Lorne Ziman at the Sunnybrook clinic in Toronto. It was for ALS patients with that specific gene mutation, which represents just 2 percent of all ALS cases. For the first time in history, there was evidence that gene therapy might be able to stop the progression of the disease in patients like Snow. “In a no-hope situation, I suddenly had a chance,” he says.
’Cuse Conversation With Chris Snow
John Boccacino, communications specialist in Syracuse University’s Office of Alumni Engagement, interviewed Chris Snow in a January podcast. On this ’Cuse Conversation, Snow shares how the gene therapy is making a difference, how he maintains a positive outlook, his transition from sports journalist to front office executive and why he bleeds Orange.
Balancing Determination and Grief
A month after the life-altering diagnosis, Snow was entered into the clinical trial and started receiving monthly spinal injections of the trial drug Tofersen. He did not know whether he was receiving the actual drug or a placebo. The fear generated by that unknown piece was challenging, but it was tempered by the awareness that, other than losing the use of his right hand, his symptoms didn’t seem to be getting any worse. It was then that the intrepid young family adopted a conviction: Snow would be the first person to live with ALS rather than die from it.
Shortly after her husband’s diagnosis, Kelsie Snow resumed her writing career with a goal of bringing their story to light. She created a blog, Kelsie Snow Writes, where she chronicles her family’s ordeal as they struggle to embrace hope in the face of an unbearably cruel disease. She recently launched a podcast called “Sorry, I’m Sad,” in which she and her husband share their experiences and talk to others who have had to deal with upheaval and loss.
“My family is grieving,” she writes, “and we are also joyful. We are scared, and we are hopeful. We laugh, and then we cry. All of these emotions exist together. Sometimes they overlap. Sometimes we know we are doing it right. Sometimes we are barely holding on.”
But they have reason to be encouraged. Snow recently passed the 21-month mark following his diagnosis, so he has now outlived the dreaded time frame by three months. Last fall, he had some facial muscle weakness followed by difficulty swallowing, which necessitated the insertion of a feeding tube. But he can still walk, talk and work. He can ride bicycles, ice skate and play left-handed catch with his kids. In the dark world of ALS, Snow’s story is a long-awaited ray of hope illuminating a path to future breakthroughs.
A firm belief that those breakthroughs are imminent propels them forward. “We are resilient by nature,” Snow says. “We’ve chased every bit of science and research. We found the right doctors, and we put our faith in them. And we have benefitted from all the feedback coming back to us through those vehicles. We have a community of otherwise total strangers supporting and caring for us. And we have kids. Kids supply so much positive energy and demand the same. They keep our home a busy, loud, normal place.”
Research Becomes a Lifeline
Snow knows that the only thing that can keep the momentum going for ALS patients is research, and no matter what his own future holds, he would like that to be his contribution to the world. “I want to help find a cure for this disease through fundraising. Lou Gehrig died of ALS 80 years ago, and we aren’t meaningfully better at dealing with it today than we were in 1941.”
So far, the Snow family, along with their Calgary Flames family, has helped generate more than $450,000 for ALS research. The team came up with a challenge called #TrickShot4Snowy, where anyone who wants to participate can record themselves taking trick shots in hockey or other sports and donate at Snowy Strong for ALS. “I encourage people to support any initiatives that lobby the government to increase funding for research and to donate to that research,” Snow says.
One of Snow’s best memories of his time at Syracuse University is taking part in a basketball program for disadvantaged youth. “They just wanted attention, and we gave it to them. I’ll never forget that,” he says. Now he wants to give something to people living with ALS. “By giving people hope, their story might have a different ending. I want my own children to have me here for a long time. And I want them to see that difficult things—impossible things—can be done if you’re positive and invest yourself fully in being part of the solution.”
This story was published on .
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