Chris Snow’s many gifts include a smile that, even now in his hardest hours, could outshine a glimmering midnight desert sky, along with his enduring fascination with numbers.
Snow, 38, grew up in Melrose and became a top-notch Red Sox beat reporter at the Globe soon after graduating from Syracuse in 2003. He exited journalism in his mid-20s for the grand opportunity to create the analytics department for the Minnesota Wild and moved a few years later to the Calgary Flames, where today he is an assistant general manager, overseeing data mining, aiding in player development, and handling most of the club’s player contract negotiations.
Sitting inside the near-empty TD Garden Tuesday morning, following the Flames’ morning workout, Snow was spinning numbers again.
But these were life numbers, not hockey numbers.
“Twenty thousand people,” he told an old friend as they sat in the loge of the chilly building. “Just a little more than it takes to fill this building, right? And then I fall into a first subset of 10 percent. There are only 2,000 of us.”
Us. North Americans living with ALS, the debilitating neurodegenerative disease that we know all too well around here because of the courageous battle we saw Pete Frates wage against it for so long.
The 2,000 people in that subset, including Snow, are those with the familial iteration, those who’ve inherited the disease via family genes. Prior to his diagnosis last June, Snow the last 15 years witnessed ALS claim the lives of his father, two of his paternal uncles, and a cousin, ranging in age from 28 to 68.
Snow’s right arm, elbow to hand, began to fail him last spring, soon after the conclusion of the Flames’ season. Doctors in Alberta ran tests. They ruled out a problem with his ulna nerve, sometimes the culprit with ailments of forearm and hand. They told him it was not a pinched nerve in his neck.
Finally, a doctor in Calgary narrowed it down to the likelihood that it was ALS.
“The ultimate gut punch,” said Snow, recalling that initial diagnosis, his wife, Kelsie, with him that day in the doctor’s office. “Like I said to Kelsie then, and I’ve said many times, this is a death sentence.”
Within hours, life’s clock ticking now at a faster pace, Snow was on the phone to Florida to speak with Dr. Michael Benatar at the University of Miami’s Miller School of Medicine.
“My dad really liked and respected him,” said Snow. “He’d visited with him when he was healthy, and then later when he was sick.”
Bob Snow, Chris’s father, was a career educator and then a hockey reporter in his years of semi-retirement. He died in August of 2018, within eight months of his ALS diagnosis.
Bob Snow’s brothers David (48), Brad (52), and cousin Matthew (28) died within eight months of initial diagnosis.
Which is what had Chris reaching out to Benatar within hours of his own diagnosis. If he visited as a patient in their Miami clinic, they told him, they could see him in a month or two. If he wanted to be part of a research group, the doctor could see him within a week.
“We’ll take the week,” said Snow.
Benatar confirmed the ALS diagnosis. Rarely, he told Snow, did he see fit, young patients with the disease.
Benatar immediately called Dr. Lorne Zinman at Sunnybrook Hospital in Toronto and said he felt Snow would be a prime candidate for Zinman’s research around the gene SOD1, which researchers believe is the lead suspect in triggering familial ALS.
Only 400 of the 20,000 living ALS patients, said Snow, have been identified as having the mutated SOD1 gene.
“What do I do now?” Snow asked Benatar during the office visit.
“Two things,” Snow recalled the doctor telling him. “Do what brings you joy . . . and you need to join the clinical trial.”
Chris, Kelsie, and their two children, Cohen (8) and Willa (5), spent the next few days at the NHL amateur draft in Vancouver. Once home in Calgary, after a drive through the Canadian Rockies (part of the joy therapy), they finalized plans to visit Zinman in Toronto.
If he signed on to the study, it would include having an experimental drug injected once a month at the base of his spine, along with a monthly battery of testing, to monitor any changes in his strength, breathing, and motor skills. The clinicians in Toronto made clear it was a big commitment. He should take time to consider it, they told him.
“People with the disease, they’re desperate,” said Snow. “They’ll try anything.
“You could tell them, ‘Hey, we don’t know the side effects, we don’t know if this is going to kill you tomorrow.’
“And they’ll say they’ll try it, because it’s a no-hope disease. But it’s not for me, I don’t think.”
It is now eight months since his diagnosis. The good news, the outrageously good news, is that nothing has changed.
The disease has not spread, his arm is the same. His breathing, he said, ranks among the top 5 percent of males his age (again, folks, he’s a number guy).
Everything for Chris Snow, eight months post-diagnosis, is status quo, the reason that perpetual smile is still beaming.
“One side effect is what I guess you’d call hypermetabolism,” he said. “I mean, I can eat a ton. Dr. Benatar told me my diet can be high protein, high fat, high carbohydrate. When I got to the draft, I was eating bags of Reese’s cups and pretzels at our table. One of our guys gave me this look, and I said, ‘Hey, doctor’s orders.’ ”
The tests go on. Chris and Kelsie make their monthly visits to Toronto, two days each month devoted to Chris taking the experimental drug and undergoing the testing.
A true hockey guy, he has not missed a shift at work. His typing speed is slower, because he is forced to peck with only his left (nondominant) hand.
Kelsie, also an excellent sportswriter before the family shipped off to Calgary, has written superbly and passionately about Chris’s ordeal (see: kelsiesnowwrites.com). Her words are gripping. Be prepared to hold tightly to the roller coaster of emotion in her prose.
Meanwhile, Chris and Kelsie cling to their faith and love for each other and their kids. They cling to science, research, and an experimental drug with crosshairs on a specific gene.
Above all, they cling to hope and time.
“He looked at us and said, ‘We’re here to make history,’ ” said Chris, recalling some of Dr. Zinman’s first words in Toronto.“ ‘This is a very exciting time.’ ”
. . .
Chris and Kelsie, eager to increase public awareness about ALS and aid research efforts, have helped raise over $100,000 toward research in the last eight months. Information regarding donations can be found on the Calgary Flames website..