How Taste of the Finest Supports Those Living with Cystic Fibrosis

John Miller might not seem like a fighter. With a shock of sandy blonde hair and a bright, ready smile that makes him look even younger than he is, the soft-spoken native of Collierville, Tennessee, doesn’t cut an overly intimidating figure. Throw in a preppie button-down and some deck shoes to match, and the 31-year-old Little Rock attorney is about as far from the prototype bare-knuckle brawler as you can get.

You’d never know that for every day of those 31 years, Miller has been fighting for his life, having been officially diagnosed with cystic fibrosis as a teenager, with emphasis on “officially.”

“Actually the longer story is, I was kind of diagnosed as an infant right when I was born, but at the time they didn’t have the genetic testing they do now,” explains Miller. “They didn’t really even know what gene it was that caused CF. There was a sweat test at the time in the mid 80s, and there was a grey area where it could be, could not be, and I was in that grey area.

“They thought maybe it was CF because we knew there was a history of it in the family. But ultimately they decided that maybe that was a premature diagnosis. Then fast forward to my teenage years, and that’s when I was officially diagnosed with it.”

The years between the speculative and the definitive were marked by a range of health problems such as coughing fits and sinus problems, which Miller soldiered through and toughed out.

“I’d seen a handful of specialists, but nobody could really figure out what the issue was,” he recalls. “Then finally I had been seeing an asthma doctor who wanted to run some blood work and went ahead and checked the box to see if it was CF. And so it was.

“Man, it was tough to say the least. All of a sudden you’re grappling with very serious issues at a very young age.”

Knowing what he had did little more than bring into focus some terrifying facts of life for the then 17-year-old. His cystic fibrosis would get progressively worse, degrading his pulmonary system and likely affecting his digestive system too. There is no cure, and patients must watch out for the flu and other infections as mucus buildup can be a death sentence. Life expectancy topped out around 31, meaning his life was half over before he had even graduated high school.

“It’s almost like a whirlwind, at first, just trying to figure out what it is. I don’t know how to describe it other than it changes your whole perspective.” Miller says.

“I went through phases of being a rebel, ‘Well I’m not going to let this dictate what I can and can’t do,’ you know? But then you kind of get to the point of ‘OK, I have to be mindful of it. I have to be considerate of it and let it play a role in the decisions I make. I can’t ignore it because it’s not going away.’”

Cystic fibrosis is a genetic mutation affecting the cells in the body that secrete various fluids such as sweat, digestive fluids and mucus. Instead of these secretions being thin and slippery, the mutated cells produce fluids that are thick and sticky, subsequently gumming up various tubes and ducts throughout the body.

The disease is well known, but not overly common; despite an estimated 10 million Americans carrying the CF gene, only about 1,000 new cases are diagnosed every year. Miller, of course, was one of them; his younger sister Jordan, tested in the wake of John’s diagnosis, was another.

While obviously he would have preferred it to be otherwise, John admits that having a family member who intimately understands his struggles has been helpful in living with the disease.

“It’s good to have her,” he says. “We talk all the time about being in situations. I’ll call her up and say, ‘I’m dealing with this. What do you think about that? How have you handled these situations?’ We’ve actually been able to have those conversations and figure some of that out together.

“My family is very close, and they’ve been supportive of both of us and each other. We really drew in close as a family early on as we kind of all figured this out together.”

While in law school, John became involved with cystic fibrosis research fundraising to the extent that he was recognized as an honoree at the northwest Arkansas annual gala, supporting the Arkansas chapter of the Cystic Fibrosis Foundation. Seven years later and he’s on the organizing committee for the Central Arkansas version, Taste of the Finest.

Taste of the Finest

“Taste of the Finest is our annual young professionals fundraiser,” says event chairman Deanna Jones of investment banking firm Crews & Associates. “We have various businesses who nominate young professionals who show great leadership and character. Those people spend four months raising money for the CF Foundation, and it culminates in Taste of the Finest. We celebrate what that group has done for the past four months as well as, obviously, how much money they’ve raised.”

This year’s event, slated for August 25 at the Statehouse Convention Center in Little Rock, is expected to host 600 people, and Jones hopes to raise $150,000, 90 percent of which goes directly to research, which has enjoyed significant strides in recent years.

“This is really a devastating diagnosis for kids,” says Jones. “It’s not because of anything they’ve done or any fault of their own or negative lifestyle choices. They’re dealt a hand that they have no say in. The whole thing that’s really kept me involved is that it really shows me what incredible strides the foundation is making. You really want to get behind things like that.”

Jones got involved with the foundation in 2015 and said seeing the impact of medical breakthroughs on individuals and families is one of the most rewarding things about her volunteer work.

“We have one child who went from struggling to breathe to two years ago running in a kids race by the zoo,” she says. “Seeing those milestones and keeping up with those families and feeling connected, in a way, to their progress is so humbling to what we do.”

For the Millers, of course, the event and the cause it supports is beyond personal. Research has extended the life expectancy of patients by a full decade over what it was when they were diagnosed, while new medications help stave off the cumulative effects of the disease. It’s progress that John has witnessed up close.

“(Jordan) was really starting to struggle; her lung functions were down to about 70 percent, and she was going in the hospital getting I.V. antibiotics about once or twice a year,” he said. “Then the Kalydeco (a medication) came out that was for our mutation. It was less than two months before her lung functions were up in the 90s. This drug has literally been life-changing.

“Unfortunately these drugs still don’t cover everybody with CF; they’re only available for certain people with certain genetic mutations of the disease. But it’s opened the door, so there’s a lot of hope.”

Cystic Fibrosis by the Numbers

MEDIAN SURVIVAL AGE OVER THE DECADES

NUMBER OF PEOPLE WITH CF IN THE U.S.

MEAN ANNUAL HEALTH CARE COST PER INDIVIDUAL

HOW ARE THE COSTS COVERED?