Boomer Esiason and his son Gunnar are winning the battle against cystic fibrosis

In 1993, just after being traded to the New York Jets, NFL quarterback Boomer Esiason was about to enter the New York Jets’ practice field when he was quickly stopped to receive an urgent call from his wife, Sheryl.

Their 2-year-old son, Gunnar, was rushed to Cincinnati Children’s Hospital. Shortly after, Gunnar was diagnosed with cystic fibrosis. This fibrosis is an inherited disease that causes mucus buildup and damages organs in the body, especially the lungs, often causing permanent lung damage. Although symptoms of the disease can appear at any age, at the time the diagnosis was widely seen as a fatal disease for children.

Recalling his day with CNBC’s Becky Quick on Tuesday’s CNBC Cures Summit, Esiason said his father was the first person he called after speaking with his wife. His second call was to sportswriter Frank Deford.

During the 1988 NFL season, Esiason won the NFL Most Valuable Player Award as a member of the Cincinnati Bengals and attended the award ceremony in Washington, D.C., where Deford spoke. Deford is perhaps best known for his work covering sports, but he was also a fierce advocate for the fight against CF after his 8-year-old daughter Alex died from the disease.

“I had never heard of this disease, he told me about it, and there was no dry eye in the house,” Esiason said. “I said (to Deford), ‘Can I help you? Can I help you raise money?'” So I moved back to Cincinnati and started fundraising. ”

Esiason said that when he spoke with Deford that day and told him about Gunnar’s diagnosis, he considered taking time away from soccer to care for his son. But Esiason said Deford encouraged people to “use all media outlets to put the name and face of this disease” in order to move forward in the fight against CF.

“I looked at Sheryl and said, ‘No more. This is going to be a rocket ship and we’re going to go,'” Esiason said.

This led to the creation of the Boomer Esiason Foundation. The foundation serves as a patient advocacy leader for the CF community and funds a variety of activities, including research grants, challenging support for affected families, and scholarships for students in the CF community pursuing higher education.

Esiason’s advocacy garnered Gunnar national attention, and a few months later the two were featured on the cover of Sports Illustrated in an article discussing the challenges faced by people diagnosed with CF and the impact the Esiasons were aiming to make.

But for Gunnar, the battle was just beginning. Appearing with his father on CNBC’s Cares Summit, he said, “Cystic fibrosis treatment is very aggressive and grueling,” outlining how he spent hours strapped to a nebulizer before school, had to wear a mechanical vest to remove mucus from his lungs, was fed through a feeding tube, and various other health issues associated with the diagnosis.

“I was dealing with lung deterioration after lung deterioration,” Esiason said. He recalled coming home from college and talking to his doctor about his running out of treatment options.

“At that point in my life, when I was 22 and graduated from college and everyone was moving to that city or that city and starting their careers, for me I was just moving back home and living with my parents and just going from health crisis to health crisis,” he said. “I remember feeling completely overwhelmed, feeling like I had to break out of this everlasting cycle of hell.”

That feeling led Gunnar to participate in a 2018 clinical trial of a drug called Trikafta, which was funded by the Boomer Esiason Foundation. manufacturer vertex pharmaceuticalsthe drug underwent fast-track review by the FDA and was first approved for use in 2019.

“This opportunity made me feel like I could do something with my life, even if the medicine didn’t work,” he said. “Even if the trial failed, it was an opportunity to contribute something. The central learning of this period in my life is that patients are a finite resource, especially in the rare disease field, and without them the drug development industry would not move forward.”

“When I was presented with the opportunity to participate in a clinical trial, the answer was an immediate yes, not only to escape the hell I was living in myself, but also to contribute to the broader CF community,” he said.

But miraculously, after just a few days on the medication, Gunnar said, “Everything disappeared.”

“I woke up in the morning a few days after starting the clinical trial. I remember waking up feeling rested for the first time in my life. I was 27 years old at the time,” he said. “I was always wanting something and spending nights tied up with feeding tubes and PICC lines and IV antibiotics, but within a few days it was just pure freedom.”

“We just won the Super Bowl.”

Both Esiasons recalled playing in a recreational hockey league game later that week and continuing to play despite Gunnar’s health complications. Typically, Gunnar had to cut his time on the ice short due to difficulty breathing and was often coughing up mucus when he returned from work.

But in those games, he extended his shifts, often being on the ice for several minutes at a time, which Boomer Esiason said led to complaints from his teammates, but also questions in his mind.

“I’m sitting there and I don’t know what to say. He’s playing like he’s never played before, and he’s drinking beer after the game. We stopped by to eat pizza, but CF deals with the pancreas and stomach, so these kids don’t eat much. So he sits there and basically eats half a pizza. And I was like, ‘What the hell is going on?’

Esiason, who thought her son was taking a placebo during the clinical trial, said the moment Gunnar told him he was taking the drug and that it was helping him, “I felt like I won the Super Bowl.”

“All of the things he had been through in his life suddenly had a future,” he said.

Years later, Gunnar, now 34, earned his MBA and began a career focused on new healthcare technologies. He is also married and currently has two children through IVF. He and his wife used that experience to launch the foundation’s new initiative to help CF families trying to have children through in vitro fertilization.

Overall, the foundation has raised nearly $200 million in the fight against CF and has played a critical role in extending the life expectancy of people diagnosed with the disease. Many now live into their 60s or older, a remarkable change for a disease that in the 1980s was considered to prevent children from living past elementary school age.

“It’s not the easiest thing in the world to put something like this out there,” Boomer Esiason said. “But I can tell you, if we hadn’t done what we did, and if Gunnar hadn’t been a part of it, we wouldn’t be sitting here today. And a lot of that has to do with putting a face on something that people know nothing about. That’s what Frank Deford did for me in 1989, and that’s what we’ve been trying to do since 1993.”