BUFFALO, N.Y. — Nicole Ellis completed her first 5k run in 2020, something that just a short time ago would've seemed almost impossible.
"I am currently healthier than I have been in the last ten years," according to the 36-year-old Ellis, who's living with cystic fibrosis.
Ellis told 2 on Your Side she was diagnosed right after birth. It was news her parents never could've expected.
"They were told that with really good care, I could maybe make it to my early teens," Ellis explained.
But her parents quickly joined the cause. They founded the Redbone Fishing Tournaments to raise money and awareness.
Ellis said, "I've pretty much grown up with the Redbone, and because of the Redbone."
Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time, according to the foundation's website.
For many people living with the disease, it can require hours of treatment each day and repeated two to three-week hospitalizations.
However, around this time last year, Ellis received her first round of a life-changing medication called Trikafta.
She said that by Christmas time, her pulmonary function test had gone up 18 percent.
"So when I got the results, I printed them, and I framed them, and I wrapped them in a Christmas gift for my parents because it was just so amazing. All their hard work and efforts to raise money for CF, it was like, 'We finally did it.' This was the fighting chance that CF patients had just been praying for," Ellis said.
Via Instagram, the CF Foundation called on other Trikafta recipients to share their experiences on the first anniversary of its approval.
One wrote, "Being able to sleep through the night without coughing! Being off oxygen!"
Another said, "1 year with no hospitalizations! That hasn't happened in more than a decade for me."
Exclaimed another: "Because of Trikafta, I'm feeding tube free after lifting with one for 20+ years."
These are just a few examples of the success stories.
Through a local CF family, we connected with Mackenzie Peppin in Colorado. She started Trikafta in January of 2019.
"After my last hospital admin about four months before Trikafta, I decided I was gonna start running," Peppin said.
She added, "Something I really noticed was when it got to springtime, March, April, is that when I was going on my runs outside again, it was easier and I was able to build up endurance."
After a month on Trikafta, her pulmonary function test showed the highest percentage she had in 10 years.
When she went back in August, her pulmonary function test had gone up even higher.
"It's not only that it raises PFTs for me, but because it helps with my lung function, it helps me be able to run more, which helps me be able to exercise more, which helps raise my lung function. They all work together," Peppin explained.
However, Ellis believes work is still far from over because due in part to the different gene mutations not everyone with CF can reap the benefits.
"We're seeing this incredible wave of hope for those that can take Trikafta or Symdeko or Orkambi or all these other modulators. There have been a few. But there's still those CF patients that really have nothing in their arsenal and we've gotta fight to get them that," Ellis said.
After dedicating years of his life to raising awareness for CF, Ellis's father passed away in February, but knowing his daughter and so many other people living with the disease would be in a position to live fuller and longer lives thanks to scientific breakthroughs and fundraising efforts like the Redbone.
For more information on the foundation and how you can show your support, click here.
