‘Now is the time’
Centreville native going the distance for Cystic Fibrosis Canada
When Jim Best decided to give back to Cystic Fibrosis Canada, he opted to go big.
Best, originally from Centreville, plans to hit the road on his motorcycle June 25 to embark on a cross-canada journey from Nova Scotia to British Columbia that, he suspects, will last about three weeks.
His goal is to raise at least $10,000 for Cystic Fibrosis Canada, a non-profit organization that is near and dear to his heart for many reasons. Both Best and his little sister live with cystic fibrosis, a genetic disease impacting more than 4,100 Canadians.
“I’ve had a lot of friends who have passed away; actually, two of my close friends when I was going through the IWK when I was growing up have since passed away,” the Sackville resident said in a recent phone interview.
“It’s rewarding to ride for them… that’s why I find the motivation to do it.”
Best collected more than $10,000 in donations for Cystic Fibrosis Canada on his first charitable motorcycle tour that spanned Boston to San Francisco in 2014. In 2015, he raised an additional $2,000 for the organization by riding along the coast of Ireland.
“Ireland has the highest per capita rate of cystic fibrosis in the world,” the 34-year-old said, adding meeting people impacted by the disease and hearing that his journey gives them hope is always a highlight of his tours.
“I enjoy telling them about CF and how it’s changed. When I was born I wasn’t expected to be getting out of adolescence.”
Odds are improving
He’s happy to report the median life expectancy for CF patients is now 50.9 years, in large part thanks to the research and development work supported by organizations like CF Canada.
“It’s a disease that’s changed quite significantly over the past 20 years and I think that’s attributed to the fact that we have such great health care and access to the medications that we’ve had throughout the years.”
But there’s still work to be done.
Best, a pharmacist who has worked in Wolfville, Canning, Berwick, Middleton and Kingston, stresses the importance of making medication accessible to all CF patients during his fundraising tours.
“There’s a lot of new medications coming out to the field for people with CF to use; the problem is, sometimes they have astronomical price tags,” he said.
“We have to put them in the hands of people with CF to make sure they work.”
The cross-canada fundraising tour has been on Best’s mind for five years. In the weeks leading up to the journey, he’ll focus on maintaining his baseline lung function and building upper body strength for the long ride.
“I wear a mask under helmet and I have to pull over quite a bit and make sure I keep up with my therapy,” he said, adding that he’s learned to respect his limits while living with CF.
“When I did my US trip, I lost about 20 pounds. It’s something that definitely takes a lot out of me to do it.”
Living in the present
Best was too ill to drive his motorcycle across the country in 2016. A common cold, something that might take an average person five to 10 days to recover from, can render him out of commission for five to 10 weeks.
“You don’t have a choice to take a day off… when you’re at your baseline, you have to work very hard to stay there,” he said, noting that he’s experienced a significant decline in lung function in the past five years.
“Every year, it kind of chips away at you.”
It’s getting to the point that, more and more, Best must consciously decide how to expend his energy. On days he works, he mainly devotes his time to the pharmacy and his therapy. There’s often no energy left for friends or extracurricular activities.
“There’s a lot of days I can’t do any more,” he said.
He’s optimistic, however, that continued efforts to combat the degenerative disease will eventually lead to a cure. And he’ll continue to do his part as long as he’s able.
“In five years from now, I probably wouldn’t even be able to consider any kind of trips like this because I know my lung function will be low and I won’t be able to endure a trip like that,” said Best, noting that he’s able to provide official tax receipts for donations.
“Now is the time that I really have to do it, and I’m excited that it’s all coming together.”