Five-year-old Matt Irwin thought his grandfather’s motorized scooter was the coolest thing.
“I remember bombing around Beacon Hill Park, riding on the back,” says Matt, now 27.
Of course, the reason his grandfather was in the scooter wasn’t cool at all. Robert Irwin had been diagnosed with ALS, a degenerative neurological condition, in 1992. He died in 1994.
“I didn’t have a real understanding of what was going on at the time,” Matt says. “I just knew he was sick.”
Matt understands now, though — and wonders what it would have meant to his grandfather to see Matt play even one game in the National Hockey League.
Which is what brought the San Jose Sharks defenceman to Victoria’s Accent Inn on Tuesday, a signed jersey — one that he wore in last winter’s outdoor game with the L.A. Kings — under his arm. The Brentwood Bay boy wanted to donate the sweater to the ALS Cycle of Hope bike team, which was at the hotel to launch this year’s fundraising campaign. The nine cyclists are training for a 550-kilometre journey that will take them from Kamloops to Keremeos in August.
Matt has been coming out in support of the ride since 2012, when the Cycle of Hope was founded by Keating Elementary teacher Cindy Lister and KOOL-FM’s Robin Farrell. Lister lost her father to amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, in 2011. Setting up the Cycle of Hope was her way of fighting back against a brutal illness for which there is — so far — no cure.
Others have similar motivation. One of the team’s trainers is Jennifer Pendray, whose father, North Saanich farmer Dave Pendray, died of ALS eight years ago at age 57. On the cycleofhope.ca website, the massage therapist lists moving back home to care for her father as one of the highlights of her life, ahead of her stints on Canada’s Olympic medical team.
Also on the team is Cobble Hill’s Les Bronee, riding in memory of a pair of pals, Rick Wilkinson and Jimmy Grant — bold, athletic types claimed by ALS. Bronee and fellow carpenter Grant used to live a little too recklessly in their 20s. On Tuesday, Bronee, now 48, spoke of what an eye-opener it was to see his friend the risk-taker trapped by a disease that ultimately left him with no control over his body. Life is fleeting, right? Grant died on Aug. 5, 2011.
And on it goes. It’s hard to forget Jeanette Carlson, another who lost her father to Lou Gehrig’s, flying over her handlebars and breaking her arm during the 2013 journey through the Okanagan. Carlson’s teammates said she didn’t even like cycling, was only on the ride because, well, you do what you can to make a difference.
That extends to the fundraisers, too. Note that Juno-nominated performer Kathryn Calder, known as both a solo artist and a member of the New Pornographers, is headlining a June 17 benefit concert at Alix Goolden Hall. Calder’s mother died of ALS in 2009; the singer had been her caregiver. Music star, hockey star, teacher, carpenter, whoever — nobody’s family is exempt.
A few other events are on the calendar. Tonight, baseball fans can help the Cycle of Hope cause through a chuck-a-duck promotion at the HarbourCats exhibition game.
This Saturday is the Oodles of Noodles pasta dinner and dance at the Esquimalt Legion. I’m in the band, as are four other guys — Ed Bain, Andy Dunstan, Bill Fry, Alex Yelovatz — who rode the Tour de Rock a few years ago. Not the world’s best musicians, but we’re better bike riders than Bono.
On July 19, there’s a family-oriented 10-kilometre bike ride on the paved path around the Victoria International Airport.
Details of all these events are at cycleofhope.ca. The money will go to an ALS research project, an education fund for the children of those with ALS, and hospital equipment for those suffering from the disease in Victoria.
