East Tennessee efforts bring hope and support to people with cystic fibrosis
School matinees for Tucker Jack start at 5:30 a.m. At 14, he starts the day with a sinus rinse and respiratory treatment that lasts about 30 minutes. He takes two drugs that are metabolized during this time. The treatment uses a compressor that vibrates his lungs to make it easier for him to breathe. When his treatments are finished, he eats a hearty breakfast along with about 10 pills that help him digest his food and retain the nutrients in the meal. At 7 a.m. he is ready for the day and jumps in the car with his twin sister Caroline and older sister Abby driving.
Tucker was born with cystic fibrosis, a disease that affects parts of the body such as the digestive tract and the respiratory system. His parents, Rod and Jennifer, both UT graduates, found out about his diagnosis before he was born through genetic testing. The genetic condition can cause blocked airways and trapped germs, and it can prevent proteins from getting where they need to go in the body, among other things.
Yet despite being diagnosed with such an illness, Tucker seems to be living the type of active lifestyle that many teenagers lead. Three days a week he plays football for his school and then club football right after. And when he’s at home, he can be found playing basketball. Over the past year he has taken up golf and plays the course behind their house whenever he can. In the summer, he’s out on the water with his family fishing, waterskiing and wakeboarding.
He’s not letting his diagnosis stop him or hold him back in any way, Rod says, adding that he’s constantly inspired by his son’s tenacity and bravery. “He’s very personable and appreciates what people do for him.” The treatments aren’t easy to follow, but Rod describes Tucker as taking it all in stride.
A new hope
Tucker’s diagnosis with cystic fibrosis soon led the Jack family to the East Tennessee chapter of the Cystic Fibrosis Foundation, an organization whose mission is to find the cure for the disease, while supporting those affected.
One way to do this is to accredit patient care centers across the country. It was one of the foundation’s first initiatives in the 1950s at a time when there was a lack of awareness not only among the public, but within the medical community. There was confusion among doctors about how to diagnose cystic fibrosis, how best to treat it, and how to care for it. “The Foundation stepped in and set the standards of care, and then would go and accredit care centers across the country to help care for people with cystic fibrosis,” says Leigh Ellington, executive director of the East Tennessee chapter.
Leigh has worked with the foundation for 11 years, and during that time she has witnessed many new discoveries in medicine and seen their impact – and that of the foundation – on people with the disease.
“The work of the foundation has been truly exciting, and the progress made over the past decade is simply unprecedented for any organization I can think of or imagine,” she says, “truly adding decades of life to the people with cystic fibrosis”.
Foundation officials are pushing for better support and care for those affected, but the foundation’s work is rooted in research. This work led to one of the biggest achievements in cystic fibrosis research in 2019. A new drug called Trikafta has been approved by the FDA for use in people with cystic fibrosis. The drug was the first triple therapy created for the most common forms of the disease.
And for Tucker, it was a game-changer.
He started seeing improvements in his health soon after he started taking the drug. It’s rare that people with cystic fibrosis can take medications with them rather than adding to the long list they’re already taking, Rod says, but it did happen in the Jack household.
For the first time, Rod was able to cross off not one, but two medications from that long list stuck to the back of the kitchen cupboard door. “It’s just huge for a CF family,” Rod said. “It’s a bit difficult to keep track of everything and manage everything and having to take all these drugs, so when you can take them off, it’s huge.”
As Tucker’s journey with cystic fibrosis unfolded, Rod’s involvement with the foundation also continued. The family had felt the support of the organization since connecting with them through a friend before Tucker was born, but about 12 years ago Rod took on a higher role and joined the board of directors, serving for a long time as chairman. Finally, it was time for Rod to step down from the role and put his efforts into an idea that had been budding for some time: Catch the Cure.
An avid fly-fisherman, Rod began by traveling and participating in other tournaments that supported cystic fibrosis research. He finally decided he wanted to make his own.
“I kind of had a good base here and a good mentor to get me started in, Jim Deanda. He has two kids with cystic fibrosis and he runs a clay shooting fundraiser that he’s been organizing for over 20 years. years old. And so he encouraged me to start, probably a little earlier than I would have,” Rod says.
With Jim’s guidance and a desire to make a local impact, Rod organized the first Catch the Cure tournament in 2018. Now held annually in June, the event is a busy day of fly fishing on the river Clinch and ends with dinner. where connections are made and conversations about cystic fibrosis research are shared.
All proceeds from the event benefit cystic fibrosis research. They are donated to the organization via Advance the Cure, the small Rod foundation created just a few years ago for the sole purpose of organizing the tournament and donating the funds raised to the Cystic Fibrosis Foundation, designated for the areas of research that impact Tucker.
Rod has raised over $100,000 in donations for the foundation since the event’s inaugural year.
The foundation also organizes its own fundraisers each year, such as Great Strides, an annual spring walk – held this year at The Cove in Concord Park – where all funds raised support ongoing research into the disease. The organization also organizes community meetings for families with cystic fibrosis throughout the year, knowing how difficult it can be to cope.
Due to the nature of the disease, people with cystic fibrosis should not be together in the same space, especially indoors. The foundation helps to combat this isolation by organizing outdoor events where those affected can be in the same place, but at a distance.
“When we can get together for events, and the guards can get together, or the CF fighters can be in the same park at the same time at least 10 feet apart and see each other, it just helps them get along. feeling supported and not alone on a journey that is truly so unique and difficult for others who are not on it to understand,” says Leigh.
The foundation also funds and accredits approximately 130 cystic fibrosis care centers across the country, two of which are located here in East Tennessee: the UT Medical Adult Cystic Fibrosis Care Center and the pediatric care unit at the Children’s Hospital of East Tennessee, where Tucker is going. “That makes Knoxville a favorite for much of the surrounding area,” says Rod. “We are lucky to live here and to be able to enjoy it.”
Through its work and accreditation, Children’s supports approximately 170 children like Tucker from East Tennessee and the surrounding area with services such as sweat diagnosis and genetic testing, as well as disease management and l family education. “They’ve done a great job at The Children’s taking care of Tucker,” Rod says, “and it’s getting better every year.”
Rod and Jennifer form a team that deals with Tucker’s treatment; it is a way of life for the person who suffers and the family that supports them. “The treatments, the medications, the doctor’s appointments, you know, all that’s involved is our life, and our family supports that,” Rod says.
The network of friends, the events the foundation plans, as well as Rod’s fundraising help them feel supported and create a much-needed sense of community here locally.
The race to find a cure is still on, even with advances in medicine like Trikafta and improvements in treatments. There are 1,800 mutations – and counting – that can cause this disease, but the progress being made, thanks to research and lobbying by the Cystic Fibrosis Foundation and affected families like the Jacks, are important milestones. to help people with cystic fibrosis get better.
Leigh echoes that purpose is always a cure. “At the end of the day, we want CF to be eradicated. We don’t want that to be a concern. In the next generation, the generation after, we would just like that to go away.
To learn more about cystic fibrosis and the work being done locally through the Cystic Fibrosis Foundation, visit www.cff.org/chapters/tennessee-chapter.