Pringle look­ing to raise funds, aware­ness

Moose Jaw Express.com - - Faces of the Region -

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.”

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