The 2021 Kenora Walk to Make Cystic Fibrosis History is coming up at the end of the month and organizers are encouraging the community to support the cause by taking part in the walk or by donating.
The walk is in memory of Jayson Morrison of Kenora, who passed away from cystic fibrosis in August of 2008 at the age of 25. Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. Jayson's mother Kim Morrison was the organizer of the event for 10 years until she passed the torch on to Brenda Chambers-Ivey and Peter Scheibler a couple years ago.
"Unfortunately not a lot happened last year. We did raise some funds, but didn't actively campaign in the community because everybody was hard-hit by COVID-19 at the time. This year we are taking more of an initiative and hope that people will consider supporting us," says Chambers-Ivey
The virtual walk will take place on Sunday, May 30 and both five and 10 kilometer options are available for those who register. If you would like to sign up or donate to support the cause, you can at Kenora - Walk to Make CF History
The walk is a cause close to Chambers-Ivey as she herself lives with cystic fibrosis.
"I was diagnosed at three-weeks-old because of pneumonia. I was one of the lucky ones because I was diagnosed early and was able to start treatment. I led a relatively normal childhood and didn't start having lung involvement until I was in my late teens," she added.
In 2003 she underwent a double lung transplant because she was in end-stage lung disease and her lung capacity was down to 16 per cent. She adds that today she is doing well and explains the importance of the Walk to Make CF History.
"The reason that we work so hard to raise funds every year for CF is to help people that are currently suffering from CF and having to go through treatment and, like myself, end-stage lung disease. But also for the upcoming generations. There have been so many wonderful discoveries as far as therapies and medications that they are able to treat the underlying defect of CF," she adds.
Trikafta is a transformational drug that can treat up to 90% of Canadians with cystic fibrosis. It is a triple combination precision medicine (vacaftor, tezacaftor and elexacaftor). It is not yet available for sale in Canada.
All proceeds from the 2021 Kenora Walk to Make Cystic Fibrosis History will go to help the efforts of Cystic Fibrosis Canada.
Brenda Chambers-Ivey joined Thursday's Q Morning Show to tell us more about the walk and to share her story about living with cystic fibrosis.