The Calgary Flames Foundation and Chris and Kelsie Snow are proud to announce the direction of funds raised through the Snowy Strong fundraising campaign.
Two years ago this week Assistant General Manager Chris Snow revealed his ALS diagnosis and his intention to help fund a cure. Since, the Snowy Strong endeavor has raised $520,000. One year ago $200,000 was gifted to the Hurvitz Brain Sciences Program at Sunnybrook Health Sciences Centre in Toronto to help fund an innovative, world-first clinical trial. More than $70,000 is at work at the University of Miami’s Miller School of Medicine, an international leader in research into familial ALS such as Chris’ form of the disease. Today, $240,000 through the Calgary Flames Foundation will be directed to the CAPTURE ALS initiative led by Dr. Sanjay Kalra at the Neuroscience and Mental Health Institute at the University of Alberta.
“Two and a half years since Chris was given one year to live he continues to be an active parent, to work as he always has and to coach youth hockey and baseball,” the Snow family said. “But he’s had losses: a hand, his swallowing, his ability to make facial expressions, and his ability to speak with full volume and clarity. He is a testament to both the power of scientific research and to how much more is needed. ALS remains a death sentence in part because there is no centralized database of biological samples and clinical data accessible to researchers worldwide. This is what CAPTURE intends to create, and we believe this is the template for unlocking the mysteries of this disease. We could not be more supportive of CAPTURE’s mission and team.”
The Comprehensive Analysis Platform To Understand, Remedy and Eliminate ALS, or CAPTURE ALS, is a Canadian research platform that unites internationally renowned ALS neurologists and researchers with patients at sites in Edmonton, Toronto, Montreal and Quebec City. Study participants will be followed over time by a neurologist to undergo questionnaires, MRI scans, cognitive and speech testing and to have blood and spinal fluid collected and analyzed for disease biomarkers. Using advanced analysis methods, CAPTURE ALS will combine all data to identify unique subtypes of ALS patients and to provide insights that will inform personalized medicine strategies. Through Open Science, researchers across Canada and the world can register to access the coded data and participant samples to help understand the causes of ALS, the variability that exists between patients, and to identify new treatments.
CAPTURE ALS is currently funded through the Canada Brain Research Fund, an innovative partnership between the Government of Canada and Brain Canada, and by ALS Canada, Alnylam Pharmaceuticals, Regeneron and the Canadian Institutes of Health. Today’s gift will increase patient enrollment by 20 per cent.
“We thank Chris Snow and the Calgary Flames Foundation for this incredibly generous gift that empowers Canadians to participate directly in the global fight to end ALS,” said Dr. Kalra.
Thank you to the many people and organizations who have generously donated to the Snowy Strong initiative through the Calgary Flames Foundation.