By Kris Leonhardt
MARSHFIELD — “One of the symbols of cystic fibrosis is 65 Roses,” said Dr. Vijay Aswani, who works in Internal Medicine/Pediatrics with Marshfield Clinic Health System. “The story is about Ricky. Ricky had cystic fibrosis. This was 1962, and he was 5.
“His mom was working to raise funds for the Cystic Fibrosis Foundation so there would be money to do research to find a cure for Ricky and his brothers, who all had cystic fibrosis, and his mom asked him, ‘Ricky, do you know what Mommy does?’ and he said, ‘I do, Mommy. You work for 65 Roses,’ because he couldn’t say ‘cystic fibrosis,’ so he called it ‘65 roses.’”
Since that day, 65 Roses has become a symbol for a disease that affects the lungs and digestive system of about 30,000 children and adults in the United States.
Understanding cystic fibrosis
“Cystic fibrosis is a genetic disease. You are born with it,” explained Aswani. “It’s lifelong. There is no cure. Life expectancy is age 31.
“You need lifelong care and treatment, and you don’t live a full life expectancy.”
Aswani explained that the primary defect that results from cystic fibrosis is the accumulation of mucus. The mucus clogs the lungs and leads to infections, and most of the treatments for the disease are designed to expel the mucus from the lungs.
“The mucus is not only in their lungs. It is in their pancreas, so that gets destroyed, and they get diabetes. It is in their joints, so they get arthritis. It’s in their genital and urinary tract, so they become sterile,” Aswani said.
“Ultimately, what kills them is the lung disease,” he added.
One of five treatment centers
“There are about 30,000 Americans with the disease and 645 people in Wisconsin with the disease right now,” Aswani said. “The care is distributed among five (Wisconsin) centers, and we are one of those centers.”
With three of the centers located in southern Wisconsin, just St. Vincent Hospital in Green Bay and Marshfield Clinic provide treatment in the central and northern portions of the state.
“The (Marshfield) center has about 55 patients, adults and children roughly split 50-50,” said Aswani.
“For us it is a privilege to be able to be here, so these families are driving,” said Kim Heeg, social worker with Marshfield Clinic Health System Department of Community Resources. “If you live in the Northwoods, you would otherwise be driving somewhere in Minnesota or making a very long trip, probably to Green Bay.”
The need for funding
“From the 1930s to the 1950s, most people didn’t live to be 5 years old, and now in 2017, life expectancy is still in the early 30s,” explained Aswani. “But if you look, … life expectancy has basically doubled and tripled as more treatments became available.
“The Cystic Fibrosis Foundation is responsible for doing all of this. Some of the drugs that are being created … have been funded by the Cystic Fibrosis Foundation. They funded the research that led to the discovery of a gene for cystic fibrosis, which opened up a whole new avenue for treatment and research and, ultimately, a cure, we hope.”
“This is why this is so important: because it helps raise the money to keep that research going,” said Heeg. “All of us dream of a day that they might have that miracle drug to cure this.”
“So we look at two things,” added Aswani. “One is we would love to have a cure, but in the absence of a cure and until there is one, we want to be able to extend life and improve quality of life.”
In addition, funding raised through the foundation comes to the five care centers in Wisconsin.
“That is in part how staff are able to dedicate some of their time to cystic fibrosis,” said Heeg.
Nobody understands the importance of the Cystic Fibrosis Foundation and its funding more than Jane Frodl, whose son Eric Virsnieks lost his battle with cystic fibrosis in 2014.
“Care for a cystic fibrosis child is constant, and it’s demanding,” said Frodl. “There is no let up and no remission. It’s a progressive disease. In the first years, he had one hospitalization a year. In his teenage years, it was more frequent. They get worse as they grow older.
“Medications can be terribly expensive. Even if you pay 20 percent, it can cost thousands and thousands. The Cystic Fibrosis Foundation comes in and lends a hand.”
Taking it in stride
To coincide with Cystic Fibrosis Month of May, the Great Strides 5K walk will be held at Wildwood Park on May 7 to raise funds for the Cystic Fibrosis Foundation.
Great Strides is the foundation’s signature fundraising event, which raised over $40 million nationwide in 2016.
“People can register as individuals, or you can register as a group of walkers, and then you get people to support you,” explained Heeg. “So you can go on the Great Strides website, and you can register your team, and then people can donate money to your walk team.
“Businesses can sponsor if they like.”
Registration will take place that day at 10 a.m., and the walk begins at 11 a.m.
“The better we do, the more money it helps raise to fund all of the projects,” said Heeg.
For more information or to sign up, visit fightcf.cff.org/site/TR/GreatStrides.