Mike Schwebach is the executive director of the Cystic Fibrosis Relief Fund, a Twin Cities nonprofit that offers emergency hunger relief to adults living with cystic fibrosis.
At just six months old, Schwebach’s life was forever altered when he was diagnosed with cystic fibrosis, a disease that negatively impacts one’s lungs and digestive system.
Doctors didn’t know how long Schwebach would survive when they delivered his parents the devastating news, but despite the setback, Schwebach was committed to carrying on as if he had been given a clean bill of health.
“I still tried to be as much of a kid as possible, but doing lung treatments four times a day definitely got in the way of that,” says Schwebach, whose respiratory system struggled with airborne infections that were exacerbated by the unpredictable Minnesota weather, which at times quite literally left the New Brighton native clamoring for air.
“I spent a lot of time in the hospital. Usually, the stretches were anywhere from seven to fourteen days, depending on the type of infection that I contracted.”
Schwebach admits that during his stints in the hospital he felt lonely and isolated, and was often left with the same question that many individuals with compromised immune systems ask themselves, which is:
Why me?
But when Schwebach wasn’t resigned to a hospital bed, he was jovial, a class clown who basked in making others laugh with his playful personality and witty sense of humor.
At the same time, he never disclosed his illness to his classmates.
“As a kid, I wanted to hide my disease from my peers because of the bullying I experienced for being different,” he notes, although concealing the fact that he had cystic fibrosis was not easy.
“I would cough frequently during the day and be out of school a lot, but when I got to college things changed because people didn’t judge me by my condition.”
An ecology and animal behavior major who attended the University of Minnesota, Schwebach loved life as a Golden Gopher.
By day he was studying subjects like wildlife and mathematics, and like every other college student, in the evenings he enjoyed socializing with his friends.
The fact that he had cystic fibrosis didn’t deter him from embracing the world around him, but fast-forward to 2018, and suddenly his perspective on the chronic illness changed when a close friend of his, who also had cystic fibrosis, was in need of a double lung transplant.
For the family of Schwebach’s friend, life was about to become more complicated, especially for the mother, who for years ran a nonprofit devoted solely to helping people stricken with cystic fibrosis.
Soon after, the woman running the nonprofit decided to cease operations, which meant the Cystic Fibrosis Relief Fund would no longer be able to help people in need.
Schwebach’s mom, who routinely donated to the Cystic Fibrosis Relief Fund, heard about the nonprofit’s closing and intervened.
Sensing her son might have a real opportunity to do something incredible, she conveniently left the organization’s last newsletter announcing its closure in a place where Schwebach would see it.
Naturally, Schwebach’s eyes came across the newsletter, and suddenly his life had a renewed purpose.
“Something just clicked, and I couldn’t simply let the fund die,” Schwebach notes.
Becoming the Executive Director of the nonprofit required Schwebach to navigate mounds of paperwork and establish a board of directors, but once that was completed, he became the face of the organization.
In the five years since taking over, Schwebach has helped countless people living with cystic fibrosis receive financial support, but he’s also met an array of people who can relate to the same challenges he has endured.
“Previously, I had minimal contact with other people who also had CF, save for a small camp that I went to when I was a kid that had eight or ten other kids there,” Schwebach says.
In addition to meeting other people who have cystic fibrosis, Schwebach has also been a resource for parents whose children have the disease and are unsure how to help their kids achieve at least a semblance of normalcy.
“Growing up, I was fortunate to have my parents backing me up, but a lot of other people don’t have a great support system,” Schwebach says.
“It is especially challenging for adults because many are trying to work a job while managing their illness, but CF alone is a full-time job, so they are enduring a lot of physical and emotional turmoil.”
With so many people in need of help, and with limited resources despite the generosity exhibited by numerous donors, Schwebach maintains that his goals haven’t changed.
Each day he awakes ready to overcome his own health challenges, as well as provide the type of support that others so desperately need.
“For so many, the prospect of getting married and having kids never seemed feasible, because none of us expected to live long enough for that to happen, but over the years that has changed for some people,” Schwebach explains.
“And if I can help people get to the point where they are living somewhat normal lives, then I’m doing what I can to make the world a better place, despite some of the unpredictable and debilitating tragedies that exist.”
For context, all the money that the Cystic Fibrosis Relief Fund generates goes directly to people living with cystic fibrosis, which helps those individuals afford groceries and pay hospital bills.
For his part, Schwebach doesn’t take a penny, partly because his budget is limited, but also because he knows just how vital each dollar he allocates toward families is to their long-term outlook.
“The donations are so crucial because, depending on the circumstances, if an individual stops receiving funds, then that person might die,” deadpans Schwebach, a man who not only has experienced agonizing pain firsthand, but is now forced to empathize with people and families going through their own adversity.
“Whenever I talk with a parent whose kid is suffering, and we have to stop financially supporting them, those conversations are not fun.”
In a universe filled with misfortune, Schwebach doesn’t share these hardships so that readers rush to grab their credit cards.
Of course, any donations the Cystic Fibrosis Relief Fund gets are highly appreciated, but more than anything, Schwebach just wants the people battling this illness every day to experience a sensation far more invigorating than whatever feeling an infusion of capital can bring.
He wants them to experience fulfillment.
“To reiterate, when someone donates money to our organization, all that money goes to people and families in need,” Schwebach says.
“Sometimes there can be a stigma around nonprofits because there are organizations who have been run poorly, but with us, there is no money that is not put directly into the pockets of someone who is in need. I don’t take a salary or anything out of the fund. My goal is simply to help people like myself, who I believe deserve the opportunity to live a dignified and fulfilling life.” QS
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