When NFL quarterback Boomer Esiason was about to walk onto the New York Jets' practice field in 1993, shortly after being traded to the team, he was quickly whisked away to take an urgent phone call from his wife, Cheryl.
Their two-year-old son, Gunnar, was rushed to Cincinnati Children's Hospital. Shortly after, Gunnar was diagnosed with cystic fibrosis, an inherited genetic disorder that causes mucus to build up and damage the body's organs, particularly the lungs, often leading to permanent lung damage. Symptoms of the disease can appear at any age, but at that time the diagnosis was considered a fatal pediatric disease.
Esiason, reminiscing about the day with CNBC's Becky Quick at the CNBC Cures Summit on Tuesday, said the first call he made after speaking to his wife was to his father. His second call was to sportswriter Frank Deford.
In the 1988 NFL season, Esiason won the NFL Most Valuable Player award as a member of the Cincinnati Bengals and attended an awards ceremony in Washington, DC, where the featured speaker was Deford. While Deford was perhaps best known for his work in sports coverage, he was also a strong advocate for the fight against CF, following the death of his eight-year-old daughter Alex from the disease.
“I had never heard of the disease, he talked and there wasn't a dry eye in the house,” Esiason recalls. “I said [to Deford]'Can I help you? Can I help you raise money? “So I came back to Cincinnati and became a fundraiser.”
Esiason said when he spoke to Deford that day and told him about Gunnar's diagnosis, he thought about stepping away from football to care for his son. However, Deford encouraged him to “use all your powers to leverage every media outlet you can to put a name and a face to this disease” to advance the fight against CF, Esiason said.
“I looked at Sheryl and said, 'No more. This is going to be a rocket and we're going to take off,'” Esiason said.
CNBC's Becky Quick interviews Gunnar and Boomer Esiason at the CNBC Cures Summit in New York City on March 3, 2026.
CNBC
That led to the founding of the Boomer Esiason Foundation, which serves as a patient advocacy leader for the CF community and provides funding for various causes, including research scholarships, hardship assistance to affected families, and scholarships for students in the CF community pursuing higher education.
Esiason's defense put Gunnar in the national spotlight, and months later, the two appeared on the cover of illustrated sports with an article looking at the challenges faced by people diagnosed with CF and the impact Esiasons would aim to have.
But that battle had only just begun for Gunnar. Appearing alongside his father at the CNBC Cares Summit, he said “cystic fibrosis care is extremely active and arduous,” describing the hours he spent strapped to a nebulizer machine before school, how he had to wear a mechanical vest that dislodged mucus from his lungs, eating through a feeding tube, and the other health challenges that came with his diagnosis.
“I was dealing with one pulmonary exacerbation after another,” Esiason said. He recalled coming home from college and talking to his doctor about how he was running out of treatment options.
“At that point in my life, when I was 22 and coming out of college and everyone was moving to this city or that city and starting their careers, for me I was back home living with my parents, going from one health crisis to another,” he said. “I just remember feeling completely overwhelmed, like I had to get out of this perpetual cycle of hell.”
That feeling led Gunnar to participate in a clinical trial of a drug called Trikafta in 2018, which had received funding from the Boomer Esiason Foundation. Manufactured by Vertex PharmaceuticalsThe drug received an expedited review by the FDA and was initially approved for use in 2019.
“The opportunity made me feel like I could do something with my life, even if the medication didn't work,” he said. “Even if the trial failed, it was still an opportunity to contribute to something, and the central learning from that time in my life is that, especially in the rare disease space, patients are a finite resource and the drug development industry does not move forward without them.”
“When I was offered the opportunity to participate in the clinical trial, the answer very quickly was yes, not only to get out of the hell I was living in, but also to contribute to the CF community at large,” he said.
But miraculously, after taking the medicine for a few days, Gunnar said, “It's all gone.”
“I woke up that morning, two or three days after starting a clinical trial… I remember waking up feeling rested for the first time in my life, and I was 27 years old,” he said. “I had always expected something, and I had spent nights tethered to my feeding tube, PICC lines, and, you name it, the IV antibiotic, and within days, it was pure freedom.”
“I just won the Super Bowl.”
Boomer Esiason with his son Gunnar during Super Bowl week on January 25, 1997 in New Orleans, Louisiana.
Pedro Brouillet | Getty Images Sport | fake images
The two Esiasons recalled how later that week they played in a recreational hockey league game, something they continued to do despite Gunnar's health complications. Gunnar usually had to spend little time on the ice due to his difficulty breathing, and often coughed up snot when he returned from his shift.
But in that game, he extended those shifts, often on the ice for several minutes at a time, something that Boomer Esiason said drew some complaints from his teammates, but also raised a question in his mind.
“I'm sitting there and I don't know what to say. He plays like he's never played before, and after the game he drinks beers. We stop for pizza, and because CF involves the pancreas and the stomach, these kids don't eat much. So he sits down and basically eats half a pizza, and I'm like, 'What the hell is going on?'”
Esiason, who had thought his son was taking the placebo in the clinical trial, said that the moment Gunnar told him he was taking the drug and that it was helping him, it was “like he had just won the Super Bowl.”
“Everything that was going on in his life, suddenly, he had a future,” he said.
In the years since, Gunnar, now 34, earned his MBA and began a career focused on new healthcare technologies. She also got married and now has two children, both through IVF. He and his wife used that experience to start a new initiative for the foundation that supports CF families seeking to have children through IVF.
In total, the foundation has raised nearly $200 million in the fight against CF and has played a key role in helping to increase the life expectancy of those diagnosed with the disease, many of whom now live into their sixties or beyond, a remarkable turnaround for a disease that was once considered in the 1980s as a condition in which children did not survive past elementary school age.
“It's not the easiest thing in the world to make something like this public,” Boomer Esiason said. “But I can tell you that if I hadn't done what we did, and Gunnar wasn't involved, we wouldn't be sitting here today, and a lot of that has to do with putting a face to something that people know nothing about, and that's what Frank Deford did for me in 1989, and that's what we've been trying to do since 1993.”
