Calgary Flames assistant general manager Chris Snow has been diagnosed with ALS.
The team announced the news on Wednesday in a letter written by Kelsie Snow, Chris’ wife, detailing the diagnosis and the early treatment that Snow has gone through in an effort to fight the disease.
That treatment has Snow enrolled in a clinical trial “for the most encouraging ALS gene therapy treatment to come along.”
The Snow family has been devastated by ALS over the years, losing his father, two paternal uncles and a cousin to the disease. The drug that is the subject of the clinical trial that Snow is now in targets the specific genetic mutation that has impacted their family.
Kelsie writes that Snow has been enrolled in the trial for several months, and while they do not know if he is on the actual drug or a placebo, the disease does not seem to have progressed since the initial dose with his right hand and forearm being the only impacted parts of his body.
More, from the Flames:
In the simplest terms, this drug works by silencing the effects of the mutated gene, and in Miami we could see how hopeful the doctor felt. So hopeful that when I asked if he believes this drug could stop progression entirely, he said, “We don’t know, but it’s not outside the realm of possibility.”
And so we are leaning into that possibility, as hard as we can, working to stay positive and living with intention every single day. And now we believe we have results to lean into as well.
Chris has been in the trial for several months, and while we do not know whether he is on the actual drug or a placebo, the disease since that initial dose does not seem to have progressed. His right hand and forearm remain the only affected areas of his otherwise strong and healthy body.
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. No matter the obstacle, no matter how unprecedented the situation may be – he always, always finds a way.
You can read the letter in its entirety here, as well as get information on where and how to donate for ALS research.
Snow joined the Flames organization in 2011 as their director of hockey analytics.
He was promoted to assistant general manager in September of this year. Prior to that he was the Minnesota Wild’s hockey analytics expert between the 2006 and 2010 seasons.