"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." - Kelsie Snow
Chris Snow, Assistant General Manager of the Calgary Flames, was diagnosed with ALS in June 2019. The most tangible way you can help us is by donating to research. ALS is a rare disease, and rare diseases aren't easily cured. Fewer than 20,000 people in North America are estimated to be living with ALS. Of them only 2,000 are living with familial ALS, the kind caused by a gene passed down within a family. And yet this has torn through Chris' family. We have lost Chris' dad, both of Chris' paternal uncles and his 28-year-old cousin to this disease. We know that our hockey family will want to help, and we appreciate that so much.
Here's how you can do that:
Donate to the Calgary Flames Foundation to directly fund ALS research and new treatments at the most progressive institutes, including Sunnybrook Brain Sciences Centre in Toronto.
Chris visited Sunnybrook 13 times over a nine-month period to participate in a clinical trial under the supervision of Dr. Lorne Zinman, the founder and first chair of the ALS Research Network. As of May 1 Chris is participating in the same gene therapy study at the University of Calgary under the leadership of Dr. Lawrence Korngut, the longtime chair of the Canadian Neuromuscular Diseases Network. The drug Chris receives every four weeks targets the specific genetic mutation that has devastated Chris' family. Research dollars produced this treatment, and research dollars will accelerate a cure.
Donate to the University of Miami's Miller School of Medicine to directly fund ALS research and new treatments.
Chris and Chris' dad were diagnosed in Miami by Dr. Michael Benatar. Chris will go to Miami yearly for life to continue to be studied. Chris and his dad chose Miami because since 2014 Dr. Benatar has led the Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium, an international group dedicated to identifying early markers of ALS and a cure. The more funding Dr. Benatar receives, the faster he and his staff can work.
As of Sept. 4, 2020
To read more about Chris and his family's journey his wife Kelsie's blog can be found here: https://kelsiesnowwrites.com