From Dying to Thriving

Living far beyond the lifespan he was promised, a Raleigh local now faces a different kind of fight—and is using his second chance to help others facing the complex reality of survival and create a life worth living.

If you met 40-year-old Pete Proimos on the street, you’d never guess he was told he wouldn’t make it to 19. Yet here he is. “It’s a huge mindset shift,” he acknowledges. “Going from ‘let me live as long as I can because I’m dying’ to ‘let me live as long as I can because I can—and I want to.’”

It’s hard to hear Proimos recount a life where the simple act of sucking in a breath feels like drowning. Never mind navigating nearly twice as many years as anyone predicted—or planned for. The latter embodies the very significant struggle of the roughly 40K adults, like Proimos, living with cystic fibrosis. But how to live with CF isn’t a blessing—or a problem—any of them expected to have. 

Growing up in Goldsboro as the son of first-generation Greek immigrants, Proimos’ pain wasn’t apparent. Living his CF diagnosis in secret, then dubbed the “child-killing disease,” he didn’t want to be seen as weak or sickly. Raised on grit, his folks navigated meager means, language barriers and a lack of formal education in Gary, Indiana, before relocating here for UNC Health. The poster child for the American dream, his dad would go on to found the biggest manufacturing company in JoCo—and, to passersby, Proimos led a charmed life, but, behind closed doors, every breath was a battle, every day carrying the weight of a ticking clock.

CF affects everything,” he laments. “Besides your mental health, CF attacks your lungs, your pancreas”—any organ with a tube to your throat (read: your stomach, lungs, liver, kidneys)—creating a rampant thick, sticky plug-causing mucus that makes it feel impossible to breathe or effectively get nutrients. Never mind the persistent cough that makes you feel like a walking biohazard exposing everyone to a presumed nasty cold. “It’s really, really hard on the body,” he adds. … “Although we look very healthy on the outside, there’s a war going on inside.” 

Now, thanks to modern medicine and advancements to overcome breathing barriers, the projected lifespan of 19 has skyrocketed to 65. But for those, like Proimos, born between 1970 and 1990 who defied expectations to live well into their 30s and 40s, it’s a constant struggle to find purpose and feel whole—to balance gratitude with the realities of financial stability, food and fertility. 

The grim reality is those meds come at a premium cost. The very “miracle drug” that fixes defective lung genetics and enables the ability to breathe presents a laundry list of other complications. While, say, 30% lung capacity qualifies for disability, better lung function means that eligibility vanishes. … “How is that?” he insists. “How would that ever be OK?” Add to that any sort of financial independence in a world where you wouldn’t have made plans to go to college or start a family—because presumed dead by 19. 

It’s the worst kind of catch-22: struggling to reconcile staying alive when you haven’t been set up to live well. Die without the life-saving medication, or live a life you can’t afford with no sense of purpose. “I never want somebody to think ‘I should get off of medication’ because they need to go back on disability to survive,” he says. “I have to help and support these patients in the middle that are in limbo… in purgatory.”

So he’s made it his personal mission to reach all people born in those two fateful decades to “piss on that,” he asserts. “I don’t care what the program is. I don’t care what the hurdles are. I’ll break it. Every dollar I have personally will go toward fixing this thing that’s broken.” Enter Proimos’ Filotimo Foundation. Embodying the kindness-forward Greek philosophy Filotimo for which it’s named, the organization lives and dies by an MO to do what is right, compassionate and generous, no ego and no strings attached. 

After a pivotal 2022 appointment, Proimos’ doctor introduced him to former CF nonprofit Spiritus, whose founders’ daughter Jessica tragically passed away from CF a decade earlier. Before her passing, Jessica made them promise to care for adults living with CF “because they’re not recognized for the real-life problems they have.” The issue? Lacking the backing it needed to continue, Spiritus was winding down, he recalls. “And I thought, ‘Well, this might be it—this might be why I’m here. I don’t know, but I’m gonna give it a good shot in 2023.’” 

On the “healthier side” of CF and with funds to spare, Proimos was—and is—well-positioned to do just that… for now. Except at the jump, no one knew he had CF. “It was tough,” he recalls of how acquaintances or potential foundation partners would react, unaware he was battling a terminal disease since being diagnosed at 5 months old. “‘What the hell? Why is it connected to you?’ And I would say, ‘Oh, I have a family member who has it.’” 

Realizing he had hidden for too long, Proimos was 39 when he finally uttered the words aloud. “It was like sparks blew in the person’s eyeballs,” he remembers. “And I was like, ‘Oh, that’s the connection I have to talk about now.’” Now, every time he tells his story, it’s “How can I help?” 

Since then, his foundation has flourished, primarily attacking the limbo via two crucial pathways: to financial freedom and to having a family. Already having distributed $400K+ in direct aid—think tuition, rent, mortgage payments, fertility treatments, copays and utility bills—Proimos says hardship assistance and fertility support top the list of needs for the community, accounting for 53% and 47% of every foundation dollar spent, respectively. 

Creating a customized pathway to employment and financial independence, ally Wake Tech provides a flexible selection of job training, classes, certifications, licensing and two-year degrees to empower adults living with CF to build a sustainable life at their own pace and in their own community—so they don’t have to remain on disability or sacrifice education and/or health.

And further paving the way to purpose is the foundation’s partnership with Atlantic Reproductive Medicine, tackling CF-related infertility head-on by retrieving sperm otherwise wiped out by congenital bilateral absence of the vas deferens (CBAVD). “That’s the loneliest thing anyone can go through,” bemoans Proimos. “But, with men, the issue of infertility can be 100% fixed with money. The disease can be eliminated just with money.” 

Today’s genetic screening takes out the guesswork—if the mother doesn’t carry CF, her child won’t either. If she is a carrier, science steps in—testing sperm and eggs post-retrieval to pick the healthy ones and wipe out CF for good. The groundbreaking approach has already made a tangible impact, as the foundation helped families welcome eight healthy babies last year alone. 

Rounding out the promising partnerships is UNC Health—the very place that inspired Proimos’ childhood migration to the Triangle. “The doctors and the social workers have not only kept me alive, they’ve supported me in adulthood in a way that maybe family couldn’t. They’ve really helped me understand my health and who I am as a person on this journey of starting and having a family.” 

While Proimos is rightfully proud of the pathways the foundation has paved, he has his sights set much further down the road: “I hope—and I’m manifesting—one day people from around the country will come to partner with us and they’ll need to come to Raleigh, North Carolina, to do so,” he muses of making the Filotimo Foundation the national leader in adult cystic fibrosis support. “Raleigh is the roots and it will always be the roots.” 

And he doesn’t need anyone’s money. “My whole background has been in the automotive world,” he explains. “We had two really nice liquidity events that have supported this foundation for the last two years, and we’ll continue to do so. What I need is to get awareness out so we can help those 40,000 patients in the U.S. who are adults with CF as fast and efficiently as possible.” And time is of the essence. While 65 is miles down the road, the clock is ticking for quality of life, giving him roughly six years of viability. It all hinges on sparking conversations and driving partnerships that could wipe out this disease. For too long, CF has been left out of the conversation. That is, until now.