RALEIGH, N.C. -- When he was about 14, Pete Proimos learned a soul-crushing statistic about the cystic fibrosis he’d endured since birth: Patients back then didn’t live much past high school.

“Should I go to college?” he asked his parents.

“Go be as normal as possible,” they replied, “for as long as possible.”

More than two decades later, Proimos is married with three children, looking at a life expectancy more than three times longer than he grew up accepting.

The difference is wild advancement in treatment, especially the therapy drug Trikafta, which has aided 90% of patients suffering from the lung disorder since its approval in 2019, according to Scientific American.

“You don’t feel like you’re drowning all the time,” Proimos said.

Help through Filotimo

So with his own outlook so much brighter, Proimos wants to extend the same fortune to some of the other 40,000 people dealing with cystic fibrosis.

His offering is the Raleigh-based Filotimo Foundation, which so far has extended more than $400,000 in aid to CF patients, many of them in North Carolina.

The prognosis for CF patients is so much better now than it was 20 or even 10 years ago that many are facing financial challenges they never expected to face.

For example, he said, if you didn’t think you’d live past 20, you likely didn’t finish college and are now working in a lower-paying job. Another wrinkle: Many patients have improved so much that they no longer qualify for disability.

Filotimo offers small-dollar assistance aimed at getting people over the hump with rent and bills, or with getting fertility treatments to start families they never imagined.

“We don’t want money,” said Proimos, Filtotimo’s founder. “We just need people to partner with us and put us in the conversation of cancer and diabetes. Remember this was a child-killing disease and now it’s not.”

Hide it with a laugh

A genetic condition, cystic fibrosis changes the fluids that coats the body’s tubes and ducts, especially in the lungs. Instead of thin and slippery, they become thick and sticky, plugging up vital pathways.

Proimos got his CF diagnosis at only six months of age, and his early doctors told him to hide his condition.

“If I had a coughing fit,” he said, “I could just go hide in a room. If I was playing outside, I could hide it with a laugh.”

Proimos is the son of Greek immigrants who came in the 1970s to work in the steel mills outside Chicago. His father Vange Proimos learned English working the night shift at McDonald's and then learned to fix cars. Over his lifetime, he built a successful business in after-market exhaust industry.

So in Greek, filtotimo means to give without expecting anything in return — an obvious motto.

Can’t buy a lack of stress

James Ragsdale moved to Raleigh from Wilmington about two years ago, shortly after his own CF diagnosis at 21.

“It was definitely a bit of a shock,” he said. “I’d been vaguely ill all my life but just never really had an answer. ... It was CF all along.”

In Raleigh, he briefly tried being an Amazon driver.

“It was like a house on fire,” he said. “Get home late, eat something super late between breathing treatments. It took its toll.”

But now, after several other false employment starts, he’s working as a bank teller for PNC. The treatments have been successful enough to scale back, and he thanks Filtotimo for providing enough tide him over in those in-between periods.

“They fill in the gaps,” Ragsdale said, “and they do so seamlessly. It does have to do with money but you can’t buy a lack of stress.”

Since its founding two years ago, Filotimo has grown to cooperate with 10 hospitals, including UNC, offering help to any of its CF patients. By the end of this year, he expects 15 more. Recently, a gala fund raiser brought in more than $1.3 million.

It’s a long way from hiding his cough behind a laugh.

“I’m not a good person,” Proimos joked. “I’m just trying to be.”

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