“When you are loved, you have everything:” ALS Canada ambassador Eddy Lefrançois reflects on 25 years living with ALS

Like many young people, 22-year-old Eddy Lefrançois had carefully mapped out his future and had a vision of how his life would be. Then, on April 14, 1992, his doctor delivered the news that Eddy had ALS. That day and that news changed his life forever – but not in the way you might expect.

Being unfamiliar with the disease, Eddy was shocked to discover that there were no effective treatments for ALS, and that the diagnosis brought with it a life expectancy of only three to five years.

“At the beginning I was mostly focusing on what the disease was taking from me,” he says — including his ability to move his arms and legs, and to speak. But as time went on, his perspective changed. He now refuses to allow his ALS to determine how he will live the rest of his life.

“I focus my energy on what the disease has given me,” says Eddy. “All the opportunities that have been offered to me, things that would not have happened and people I would not have met.”

Five years after his diagnosis, Eddy had out-lived the prognosis he was given. Little did he know that his journey had just begun. Years later, he travelled to Las Vegas and got a tattoo reading “EXP: 04.97” to indicate that he had surpassed his own “expiry” date.

While fewer than five percent of people diagnosed with ALS will live for 20 years or more, Eddy has now been living with ALS for 25 years. And his tattoo still provides him with motivation. He says that each time he looks at the numbers, “I am reminded that I am fortunate to still be alive and to keep at it for every single person and family who fought and are fighting ALS.”

Eddy has been particularly inspired by the phrase “Let’s Roll” as exclaimed by Todd Beamer, a passenger aboard one of the ill-fated 9/11 flights. Along with a small group of fellow passengers, Mr. Beamer had decided he would not go down without a fight. For Eddy, the phrase is an iconic statement of resiliency and one he has adapted for his own use. “Let’s Roll Out ALS” has become his personal mission and tagline. As an ALS Canada Ambassador, he spends much of his time and energy raising awareness and funds for ALS research and support, including an online store that sells “Let’s Roll” keychains and stickers.

To mark his twenty-fifth year living with ALS, Eddy is travelling to Toronto from his home in Northern Ontario. He and his friends will visit the Hockey Hall of Fame and dine at the 360 Restaurant in the CN Tower. In addition, he has set a goal to raise $25,000 by June, which is ALS Awareness Month. The campaign goal reflects each of the twenty-five years he has been living with the disease.

Despite all of the challenges that living with ALS presents, Eddy says he would not change the last 25 years for the unknown. When others ask for his advice on how to navigate the disease, Eddy replies: “I take in consideration medical advice, but I do what feels right to me and brings me joy. I used to believe when you have good health you have everything. Now I know that when you are loved, you have everything. Let’s Roll Out ALS together!”