What you can do to support the cause
By Gabrielle Gasser EBS STAFF
BIG SKY – The strange mechanical clicking and labored breathing of four firefighters creates an unfamiliar cacophony of noises as they rush by.
No, they are not fighting a fire.
These firefighters are running a 5K in full turnout gear to raise awareness about Cystic Fibrosis. CF is a progressive genetic disease that affects the lungs and, over time, limits the patient’s ability to breathe.
“We run a 5K in our structural firefighting gear with our air tanks to symbolize the struggle with breathing that CF patients sometimes experience,” said Shane Farmer, a firefighter with the Big Sky Fire Department. “Our thought is that if we can be uncomfortable for 30 minutes to raise some money then it’s a small price to pay.”
Farmer founded the annual run, which he calls Fighting 4 Every Breath, 13 years ago when Chris Denison and Stacy Van Gorp, close family friends, had twins, Berne and Maren Denison, who were both diagnosed with CF. This year marks the second year that Farmer has done the run in Big Sky after moving here with his family from Iowa and it raises funds for the Cystic Fibrosis Foundation, specifically the Rocky Mountain chapter.
“The good thing about us raising the money as part of the Rocky Mountain chapter is that that money stays local in our area which is pretty special,” Farmer said.
He estimates that his run has raised about $40,000 dollars over 13 years for the foundation. Each year, the fundraising goal is set at $3,000 which is usually reached. Currently, Farmer has raised $2,550 of his $3,000-dollar goal for this year.
“When we first started, the life expectancy for someone with CF was in their 30s, now it’s into their 50s and 60s,” Farmer said. “This is a disease where there are cures and there is a lot of hope for people that have it to live normal lives and participate in normal activities because of all the donations.”
Chris and Berne Denison were present at the beginning of the run in Big Sky and Chris offered some motivational words to the firefighters by expressing his gratitude for their efforts and sharing some of the realities he and his children face every day as they live with CF.
Berne showed off his enzyme pills which help with GI tract complications due to CF. Chris described how every day the twins complete a treatment wherein they don a vest that vibrates and helps to loosen the excess mucus in their chests.
The family has been “highly involved for 15 years” through a variety of events with fundraising for the CFF according to Chris. He estimated that about $50,000 dollars a year is raised for the foundation.
The Denison family has seen concrete results made possible by the fundraising. Chris’ daughter Maren was fortunate to be chosen for a new drug trial and her Pulmonary Function Tests, which measure lung functionality, improved from the 60s back up to 99 with the help of the drug.
In the U.S., more than 30,000 people live with Cystic Fibrosis and around 1,000 people are diagnosed each year, according to the Cystic Fibrosis Foundation Patient Registry. In Montana, there are 120 people currently living with this disease.
If you would like to donate, please visit the CFF website to make your contribution.