Amyotrophic lateral sclerosis (ALS) is one of those diseases you wouldn’t wish on your worst enemy.

It slowly robs people of basic abilities that many of us take for granted – including walking, chewing, talking and, eventually, even breathing.

Carolyn Bennett, 62, learned in December 2022 that she had ALS, a condition that currently offers no cure and very limited treatment options. It’s also known as Lou Gehrig’s disease, after the legendary baseball player whose career — and life — were cut short by the illness.

About 80 percent of those diagnosed with ALS pass away within two to five years.

“When you first hear the news, you think, honest to God, that the world is ending,” her husband, Tony Bennett, told CiTC on Saturday during an ALS live music fundraiser held at Stray Dog Brewing Company in Orléans.

Bennett said his family has learned to adapt to their “new normal.” Their experience with the disease has also better prepared him to support other families facing a recent diagnosis.

“There are people in this world who say, ‘Life’s not fair,’” said Bennett. “But I think our approach has been, ‘Thank you for giving us another day. Thank you for giving us another day. Thank you for giving us another day.’ That’s our attitude. That’s how we deal with it.”

The fundraiser was organized by Carolyn’s brother David Collins, who’s been hosting a series of events, including annual comedy nights, in support of the ALS Clinic at The Ottawa Hospital. Leading up to Saturday’s event, his fundraisers had cumulatively raised just shy of $32,000.

The musical lineup Saturday featured Dan Charette and the local band Your Porch or Mine, with a special appearance from Juno Award-nominated JW-Jones, joined by Harrison Singer on bass guitar and Joel Oppong-Boateng on drums.

The fundraiser included an online auction, which raised more than $7,600. Items included a Sudbury Wolves OHL jersey autographed by the Bennetts’ first-round pick grandson, Brayden Bennett. The Bennetts, who celebrate 40 years of marriage this year, have three children and five grandsons (with a pair of twins on the way).

From left, David Collins and his sister Carolyn Bennett, who was diagnosed with ALS in December 2022, and Ottawa blues guitarist, singer and songwriter JW-Jones at an ALS live music and online auction fundraiser held at Stray Dog Brewing Company on Saturday, June 28, 2025. Photo by Caroline Phillips

Elliott Bourgeois, senior manager of the private client group at First Avenue Investment Counsel, was there with friends and family celebrating his 40th birthday. He joked: “Instead of throwing a party, I thought I’d crash one that was already happening; it’s a lot less work that way.”

Bourgeois has a connection to ALS, as well. He lost a friend to the disease this past February. Garth Steele, 64, who’d been a tax partner at Welch LLP. He was diagnosed in May 2021, just as he was preparing to retire from his 40-plus years at the full-service chartered public accounting firm.

“He was just one of the kindest human beings you could ever meet,” said Bourgeois, who worked for almost six years with Steele at Welch LLP.  “He always had time for everybody, no matter where they were in the pecking order.”

Steele kept an inspiring blog, called Faith over Fear, that chronicled his almost five-year battle with ALS, offering insight into how he bravely faced his disease with such grace and faith in God.

Steele’s wife, Cathy Steele, attended Saturday’s ALS event. She and Garth were supportive when Tony Bennett reached out after his wife’s initial diagnosis. Garth previously served on the board of The Ottawa Mission, where Tony, retired president and CEO of BMO Private Investment Counsel, is currently on the board.

Coincidentally, Carolyn received her ALS diagnosis just two days after Liberal MPP Taylor Watts’ father, Randy, was diagnosed with the same disease. Randy passed away two years later. As part of national ALS awareness month, the newly elected MPP recently made a touching statement at Queen’s Park, saying, “Watching him face this disease with courage while his body failed him was the most heartbreaking experience of my life.”

David Collins told CiTC he plans to hold the ALS fundraiser next year at the Jabulani Vineyard and Winery, operated by the Van Helsdingen family, outside of Richmond.

JW-Jones performing at an ALS live music and online auction fundraiser held at Stray Dog Brewing Company on Saturday, June 28, 2025. Photo by Caroline Phillips

Elliott Bourgeois, senior manager, private client group, at First Avenue Investment Counsel, with his wife, Lindsay Bourgeois, and their 14-month-old daughter Isabelle, at the ALS live music and online auction fundraiser held at Stray Dog Brewing Company. Photo by Caroline Phillips

JW-Jones performing with drummer Joel Oppong-Boateng and bassist Harrison Singer at an ALS live music and online auction fundraiser held at Stray Dog Brewing Company on Saturday, June 28, 2025. Photo by Caroline Phillips

ALS caregivers Tony Bennett, whose wife Carolyn was diagnosed in December 2022, and Cathy Steele, who tirelessly cared for her late husband Garth Steele. Photo by Caroline Phillips

JW-Jones gots some help on the guitar from drummer Joel Oppong-Boateng and bassist Harrison Singer at an ALS live music and online auction fundraiser held at Stray Dog Brewing Company on Saturday, June 28, 2025. Photo by Caroline Phillips

Darlene Smith, who lost her 57-year-old brother Alexander McLaren to ALS in September 2020, alongside David Collins, who’s been organizing ALS fundraisers ever since his sister, Carolyn Bennett, was diagnosed in December 2022. Photo by Caroline Phillips

Blues bassist Harrison Singer performing at an all-day live music fundraiser for ALS, held at Stray Dog Brewing Company. Photo by Caroline Phillips

Elliott Bourgeois, senior manager of the private client group at First Avenue Investment Counsel, Jesse Albert and David Reid, real estate lawyer and partner at Brazeau Seller Law, at a music fundraiser for ALS, held at Stray Dog Brewing Company. Photo by Caroline Phillips

The local band Your Porch or Mine performed at a music fundraiser and online auction for ALS, held at Stray Dog Brewing Company. Photo by Caroline Phillips

This article is made possible through sponsorship from Star Motors, WCPD, Marilyn Wilson Dream Properties, ExecHealth, Infinity Convention Centre, Altis Recruitment, Bell Canada, First Avenue Investment Counsel, RBC, Welch LLP, Brazeau Seller Law.

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