Pringle looking to raise funds, awareness
Conducting a newspaper interview in public with Moose Jaw’s Cole Pringle can be a bit of a difficult task.
Not because Pringle isn’t an engaging subject – far from it, in fact – but the number of people who come up to introduce themselves and offer support for his cause makes for a steady stream of interruptions.
But when it comes to the reason Pringle is becoming such a burgeoning celebrity, you can bet it’s all fine and well no matter how many people he says ‘hi’ to.
Pringle is battling a disease known as spinal muscular atrophy, a rare neuromuscular disorder that causes progressive muscle wasting and impairs muscular control, eventually affecting the lungs and inhibiting unassisted breathing. Most children born with the disease die before the age of two.
Pringle was diagnosed with an intermediate form of the disease as a baby and has lived with its progressive effects well into adulthood. Now 31, he uses an electric wheelchair for mobility, living a full life and working for the government of Saskatchewan in Regina.
“The change is slow and gradual,” Pringle said of his physical mobility with SMA. “If you compared me to where I was 10 years ago, you’d see a lot of changes when it comes to my mobility and energy levels, things like that. Day to day, there’s no real changes but thinking to back to where I was it’s a huge change. But I’m quite fortunate since it can be a lot worse for some people.” That’s one of the reasons Pringle was back home in Moose Jaw on Sept. 30 for a special fundraising dinner at the Lynbrook Golf Club’s Ortley’s Lounge and Grille. He’s trying to raise awareness of a newly developed medication known as Spinraza, which entered the market in late 2016 and was approved for use in Canada in 2017. The drug – developed and marketed by pharma-giant Biogen – outright halts progression of SMA and in cases like Pringle’s can actually create a reversal of symptoms. There’s a catch, though. One that is, quite frankly, almost unbelievable.
“It’s obscenely expensive,” Pringle said. “I need three doses a year for my entire life and every injection is $120,000. So that’s $360,000 a year for the rest of my life for this drug, and naturally, that’s not sustainable.” The drug isn’t covered by any drug subsidy programs in the Canadian health care system, meaning that the life-saving injections – at that cost of a third of a million dollars a year – have to be fully paid for by patients. “So we’re trying to see what the options are in other countries, trying to raise money to get one or two injections and that can kind of delay the progression for awhile until it is covered,” Pringle explained. “That’s the idea behind this; whether I get the injection here or go somewhere else for it, we’re just trying to cover the costs.”
To that end, Pringle has been busy over the last couple of months. He’s conducted television interviews for CTV and CBC as well as with local and Regina-based radio aiming to draw attention to his situation and the difficult access to the medication he and others with the disease in Canada are experiencing. He’s also set up a GoFundMe page – ca.gofundme.com/a-future-for-cole – which had raised $24,000 as of Oct. 1. That, on top of the fundraisers like the fall supper at the Lynbrook, is slowly chipping away at the monstrous cost.
“We’re at about $35,000 and it’s been going on for a little over a month and I’m pretty happy with the support,” Pringle said. “We just have to keep doing things like this and doing what we can to raise awareness and keep the pressure on the government to do the right thing and get it covered for everyone.”
Cole’s mom Karen and dad Wayne Pringle have been alongside their son every step of the way and are also working to raise awareness as much as possible. A longtime member of the Lynbrook Golf Club, Wayne was almost overwhelmed by the amount of support he saw at the dinner, which brought in more than 100 people and raised well over $5,000 in ticket sales and donations.
“The beautiful thing about this is it was all initiated by (Ortley’s owner) Lynn (Perras-Selensky), a lot of volunteers working the door, gifts for the door prizes, that was all volunteers who stepped up to help,” said Wayne. “I almost shed a tear when I think about this and all the support, we even had people coming up and giving us donations because they couldn’t be here tonight. It’s really heartwarming to see the generosity of the people in this town and all of Saskatchewan.”
Cole himself has seen support even outside of scheduled fundraisers.
“After I was on TV in Regina, I was just going down the street and someone would come up and say ‘hey I saw you on the news last night’ and just give me $20. That’s unbelievable that people are willing to do that,” he said. “I think it also sends a message that people all agree that this is something that needs support. Everybody wants this to happen, they’re willing to help out and I hope people contact the government and make it known that they want this to happen.”