MONTREAL, May 28, 2026 – Eighty-seven years after the diagnosis of Lou Gehrig, the famous New York baseball player, amyotrophic lateral sclerosis (ALS) remains a fatal disease: it still claims eight out of ten people within five years of diagnosis. To mark ALS Awareness Month and Lou Gehrig Day, ALS Quebec is rolling out a series of fundraising activities across Quebec to raise awareness and mobilize the public around the urgent need to act.
“Lou Gehrig Day reminds us of a devastating reality: ALS remains incurable and continues to progress rapidly,” said Claudine Cook, Executive Director of ALS Quebec. “Every day counts for people living with ALS and their loved ones. That is why we are calling on all Quebecers to mobilize.”
This call resonates deeply with those living with the disease. A mother of a young boy, Christine Desfossés, 47, has been living with ALS since June 2025.
“In June 2024, I was still riding motorcycles, now, every movement is a strenuous effort. I am forced to relearn how to live my life differently. I want my seven-year-old son to remember a strong mother who never gave up. Participating in summer activities is my way of taking action, of supporting others, of helping advance research, and of continuing the fight against ALS.”
Christine’s experience reflects that of thousands of Canadians living with ALS. Within just a few years, the disease can take away a person’s ability to walk, speak, and breathe. It gradually strips away independence, shortens life expectancy, and deeply impacts entire families.
ALS can affect anyone, at any time. Approximately 4,000 Canadians, including 600 Quebecers, are currently living with the disease, while roughly 1,000 new cases are diagnosed each year across the country, alongside an equal number of deaths annually.
ALS: Qalsody Approved in Canada, but 98% of patients still without treatment
A recent breakthrough offers a glimmer of hope: the 2025 Canadian approval of Qalsody, the first treatment shown to slow, and in some cases, reverse the progression of ALS. However, this advance applies to only approximately 2% of patients, specifically those carrying a rare genetic mutation. For the remaining 98%, the search for effective treatment remains a race against time.
“Approximately 80% of those diagnosed die within two to five years, making ALS one of the most devastating neurodegenerative diseases,” says Dr. Richard Robitaille, professor and researcher at Université de Montréal.
“Today, the lack of stable funding to support long-term research is slowing progress. Without sustained investment, it becomes difficult to better understand the mechanisms of the disease and develop new therapeutic approaches. Research must accelerate: it is imperative to act now.”
Mobilizing Across Quebec
In addition to numerous public and private buildings being illuminated in blue throughout the month, ALS Quebec is organizing several major initiatives, including the ALS Quebec Walk, the cycling event ALS Quebec RIDE, and the golf event United on the Greens to End ALS. Summer fundraising activities are essential to the organization’s mission, as they help support people affected by ALS and fund research.
“Our community demonstrates exceptional strength and resilience. Every initiative, big or small, is a reflection of our collective commitment to never give up in the face of this disease,” said Claudine Cook. We cannot afford to wait. Every action taken today can change lives.”
About Lou Gehrig Day
Lou Gehrig, legendary New York Yankees baseball player, was diagnosed with ALS in 1939, forcing him to retire at the age of 36. Before thousands of fans gathered at Yankee Stadium, he delivered a farewell speech that became iconic, transforming his personal tragedy into a universal message of courage, gratitude, and humanity. His strength and humility continue to inspire those affected by ALS, a disease that, 87 years after his diagnosis, remains incurable. Marked every June 2 across North America, Lou Gehrig Day is a Major League Baseball (MLB) initiative that serves as a call to action to accelerate research and support families. Each year, the MLB honours its legacy and reaffirms its solidarity with the ALS community.
About ALS Society of Quebec
The ALS Society of Quebec (ALS Quebec) is a non-profit organization dedicated to supporting people living with ALS and their loved ones at every stage of the disease. The organization also works to raise awareness among the public and decision-makers while funding promising research projects through its ALS Quebec Research Fund
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