Lise Michaud’s brother, Eddy Lefrançois, made every day count. He lived nearly three decades with ALS, proudly defying the odds and outliving his “expiry date” (EXP: 04.97) which he tattooed on the inside of his forearm as a reminder to live with passion and purpose.

Eddy’s personal motto – “Let’s Roll” – always kept him focused forward. Just two weeks before he died unexpectedly this past January, his sister remembers him saying, “I’m not ready to go Lise. I’ve still got stuff to do.”

For Lise and her family, and for the ALS community at large, Eddy was a hero. The 20 plus walkers on Eddy’s team who participated in this year’s Walk to End ALS in Sault Ste Marie on June 1, showed up in custom-made t-shirts. Eddy’s photo was printed on the front, and on the back, a tag line from Charlie Brown that read, “Not all heroes wear capes, mine has wings.”

Eddy Lefrançois worked tirelessly as an ALS Canada Ambassador to raise awareness and mobilize others to support the cause. As a testament to the impact he had during his lifetime, thousands of messages of support were sent to the family after his passing, so when Lise took the stage to honour her brother at this year’s Walk, there were a lot of mixed emotions. She wasn’t sure she would get through her speech but she’s glad she did it.

Despite the short time since Eddy’s passing, the family never considered opting out of this year’s Walk. It was a long-held tradition that mattered, but nevertheless, “It was all a bit overwhelming,” admits Lise. “Of course, he was a hero, but for my brother Guy and myself, he was also just our brother.” Over the years, the close-knit family became even more connected, inspired by Eddy’s indomitable spirit. Everyone rallied to help Eddy adapt and Lise, his brother Guy and best friends Eric and Pat, helped in driving to appointments, advocating for him, and travelling with him so he could work through his bucket list of dreams. “Losing Eddy was surreal,” she says. “We all knew he could pass at any time, but somehow, we felt he was immortal.”

Eddy’s team – Let’s Roll for Eddy – hasn’t missed a year since the Walk to End ALS was first launched in Sault Ste Marie in 2000, and according to Lise, that isn’t about to end any time soon. She wants to raise awareness so that anyone touched by ALS knows about the Walk and understands what an important sense of community it can bring. “The feeling people get once they get to the Walk is amazing,” says Lise. “The ALS community is like a big family. Everyone who is there is in the same shoes as you, whether they’re there because they have ALS, or they’re there for a friend or family member, somebody who has passed, or somebody who has it. You have to go and feel it.”

“ALS Canada gave my brother hope and the drive to continue,” explains Lise. Through Eddy’s connection with ALS Canada, she saw first-hand the tremendous benefits of community, but also the importance of community-based support services, the ongoing work of advocacy to pressure governments for ALS funding, and the need for more ALS research investment to find a cure. These were important for Eddy, particularly the impact of technology such as eye gaze technology and the momentum to find a cure. “He loved attending the ALS Canada Research Forum,” says Lise, “and the chance to question researchers and also give his input. In the last years, he used his eye gaze technology to communicate without a translator. It was liberating for him, and exciting to be so involved.”

Lise lives three and a half hours from “the Soo” in a Franco-Ontarian town of 600 people. Driving on Highway 17 on the way to this year’s Walk, she passed a giant billboard with an image of her and Eddy promoting the local Walk to End ALS and with that, awareness about ALS. The sign, sponsored by the agency that sells roadside advertising, will be there for the next three years. “We have to keep at it,” says Lise. “We have to keep working. We have to stay hopeful.”

The Walk to End ALS takes place in over 90 communities across Canada until September 2019. Register or donate to a Walk to End ALS near you at www.walktoendals.ca.

Your fundraising efforts and generous donations support the best ALS research in the country and enable ALS Canada to provide community-based support to people and families living with the disease in Ontario. Donations for all Walk to End ALS events are being accepted until December 31, 2019.

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