THUNDER BAY – What was once considered a pediatric disease, individuals with cystic fibrosis (CF) are now living well into adulthood because of advancements in research.
There is still no cure and much more research needs to be done to expand the lifespan of children diagnosed with the disease.
This is why Karen Danelisky, chair of Walk to Make CF History, approached the city to declare May as Cystic Fibrosis Awareness Month and fly a flag outside city hall.
She is raising awareness about CF and funds for researchers to “develop more treatments and drugs that will hopefully in the end make CF stand for "cure found."
CF is a genetic condition that changes a protein in the body. The faulty protein affects the body's cells, tissues, and glands that make mucus and sweat.
Danelisky said back in the early 1960s, children diagnosed with CF wouldn’t live past four years old. However, with the advancement of medicine and research into CF, the medium age of survival is approximately 60 years.
“We've made some great strides, but we're not there yet and we need to find the ultimate cure for this,” said Danelisky.
She noted that there are pharmaceuticals on the markets today that help combat the effects of CF.
She said TRIKAFTA, which is a CF modulator drug that changes the makeup of the cells in the patient's body to allow certain nutrients to be exchanged, is one of the more commonly used treatments, but also one of the more costly.
“TRIKAFTA is extremely expensive. It's $300,000 a year, which does put it out of the reach for some people. It also does not treat all of the different mutations of cystic fibrosis, so we're still working on getting stuff that will help everybody and that's why this walk is ultimately important to get the money to fund the research and get the cure,” said Danelisky.
To raise funds for more research, the 2025 Walk to Make Cystic Fibrosis History will take place on Sunday, May 25 at Half-Way Motors Powersport at 1230 Carrick Street (across from Rust Check).
There will be on-site registration and check-in starts at 11 a.m. Opening ceremonies begin at noon and the walk will follow immediately after.
Diego Raposo, a youth who made aspeech at the flag-raising ceremony, has been participating in the walk for the past 10 years.
“It's actually super nice to see, like when I used to go there wouldn't be many people, but over the years there's been a lot more people going. I remember even last year I was surprised at just how many people were actually there and it's super nice to see,” he said.
Raposo, now 17 years old, was diagnosed with CF at the age of seven.
Raposo told Newswatch his diagnosis was not typical because most children find out they have CF through genetic screening at birth.
“They check to see if you have any genetic conditions. So, you need two genes to have CF and since one of mine was so rare, they didn't find it on genetic screening,” said Raposo.
Raposo said he enjoys being physically active but isn’t able to give it his all due to the strain on his body.
“It makes it more difficult for me like just in all aspects of my life like I like to play sports but I can't always give my 100 per cent in sports in school. I miss a lot of school, so I have to catch up,” said Raposo.
Members of the public can donate to the walk at the event on May 25 or online through their website.
