Ross and Joanne Duncan speaking with CFJC Today ahead of the 2022 Move to Cure ALS in Kamloops. (Image Credit: Kent Simmonds / CFJC Today)
MOVE TO CURE ALS

Kamloops family impacted by ALS hoping to support clinical trials for B.C. through Project Hope

Jun 17, 2022 | 4:17 PM

KAMLOOPS — The 2022 Move to Cure ALS will be taking place in person this Saturday (June 18), for the first time since the start of the COVID-19 pandemic.

It’s the major fundraising event for the ALS Society of BC. And this year, participants are collecting donations to support service programs and Project Hope. Which raises money for clinical trial research in B.C.

CFJC spoke with a Kamloops man diagnosed with ALS more than a year and a half ago, who wants to see more treatment options for future patients.

Ross and Joanne Duncan are keeping focused on positive moments. The couple recently celebrated 36 years of marriage with a vow renewal.

“That’s what we’re all about right now — just creating memories,” explains Ross. Having ALS and caring for someone with it is not easy. Many days are hard but the Duncans feel they’re closer than ever.

Joanne says it’s the hardest thing she’s ever dealt with. But when she or Ross has a particularly difficult day, the other will be there for support.

“The other will always give that hug or the support or whatever we need. I give it to Ross and he gives it to me. So we’ve always… we carry each other,” she says. “We just literally carry each other.”

ALS has also reminded their friends and family of what’s important. Ross’ diagnosis recently inspired their son Ian Duncan to fundraise with a 600-km bike ride in 24 hours. The Saanich firefighter wound up raising more than $25,000 for the ALS Society of BC.

“It was amazing to watch what he did, and the support that he had on that ride there,” says Ross.

The mobility Ross has is more restricted than a year ago; now he regularly uses a walker and a scooter for longer trips. But so far he’s on the slower side of the progression scale.

“I consider myself pretty lucky that I’ve been going strong for two years now, pretty much.”

Recently Ross has looked into clinical trials — even considering a promising-sounding study out of Calgary — but travelling frequently in his condition isn’t realistic.

“I thought, ‘Well, maybe I can be part of a future solution, I guess, to try and find a cure,” he explains, noting part of why the Move to Cure ALS is so important to the Duncans is the supportive services it raises funds for, and because a portion of the donations will also go towards Project Hope.

“There’s no clinical trials being done in B.C. whatsoever,” explains Ross. “That’s part of what Project Hope is. It’s to get a couple of clinicians in at UBC and start doing more local clinical trials.”

The Duncan family is doing their best to appreciate their time together, and taking part in the upcoming event gives them hope that clinical trials will one day be easily accessible.

The 2022 Move to Cure ALS in Kamloops will take place at McDonald Park on Saturday, June 18. Registration opens at 10:30 a.m, with the event set to begin at 11:30 a.m.

For more information about this year’s event, or to donate, click here.