For the first time since the pandemic began, “The Walk to Make Cystic Fibrosis History” was held Sunday afternoon in Regina.
The walk was held to raise awareness about the disease and to raise money for research into new medications.
Trikafta is one of the most recent medications approved for use in Saskatchewan.
For Alison Hamilton, it’s a call she will never forget.
“It was the most amazing phone call I have ever received,” said Hamilton. “The email started off by saying, ‘Hi Alison, this is the cystic fibrosis nurse and this is the email you have been waiting for,’ and everything after that was a blur.”
Event attendees took place in a march around Wascana Park for the event. (Luke Simard/CTV News Regina)
Commonly called CF, it is a genetic disease that causes long lasting lung infections and limits the ability to breathe over time.
Hamilton has lived with cystic fibrosis since she was 13 months old, but at the age of 40 she received the news that she was eligible to receive.
Hamilton was eligible to try the medication, which was funded by the Saskatchewan government last September.
“Trikafta is something that helps treat not just the symptoms of CF but actually the root cause of CF at the chloride channel level,” said Hamilton. “The results that I have been seeing have been like night and day.”
Unfortunately the medication isn’t available to everyone.
Teresa Weger is 16-years-old and has another type of CF that isn’t treatable by Trikafta.
“One of my types of CF I have wasn’t even in the database yet and the other type was super rare,” said Weger. “So we didn’t think that would have much impact on me down the road, but in today’s time, it’s much more beneficial to have a more common type with the new drug.”
Hamilton and Weger are now telling their stories at the annual CF walk in Regina and continue to fundraise to find more medications and to raise awareness for CF.
“For those that are not able to be on this new drug right now, just keep the faith and keep pushing,” said Hamilton. “Then there should be something at some point for everyone.”
This year’s annual CF walk was held virtually and in person and raised over $38,000 in Regina alone.
Organizers say it was encouraging to see the support for cystic fibrosis.
“People with cystic fibrosis can’t be within six feet of each other,” said Amy Hamilton who is on the cystic fibrosis walk committee. “We don’t see people with cystic fibrosis, so having an event where you can actually see other people that are fighting the same disease is really encouraging.”
With the advanced research and funding, Alison Hamilton can move forward; without having to worry about coughing.
“I can have a big deep belly laugh,” she chuckled. “That is something that I never was able to do before.”