Fishing tournament target: cystic fibrosis cure
A Florida Keys family, whose daughter has cystic fibrosis, has helped raised millions by creating the Redbone Celebrity Fishing Tournament, which began with Boston Red Sox great Ted Williams.
12/10/2012 9:00 PM
12/10/2012 1:57 PM
Florida Keys fishing guide Gary Ellis beamed as he watched his pretty daughter Nicole, 28, flirt with two handsome Army Special Forces soldiers during the 25th Redbone Celebrity Tournament.
“Did you get their numbers?” Dad asked.
“Not yet, but I’m working on it,” she responded with a smile.
Gary and Susan Ellis are full of hope that their daughter will one day marry and become a mom. It’s a great leap from the early years of Nicole’s life, when the Ellises did everything they could to make sure she made it to adulthood.
Nicole was born with cystic fibrosis, which causes the body to produce sticky mucus that clogs the lungs and prevents the digestive system from working properly.
In 1984, the outlook for someone born with the inherited chronic disease was bleak. Doctors told the new parents that with good care, their newborn “might live to be a teenager.”
“We didn’t know what cystic fibrosis was, but we knew we were going to fight it,” Gary Ellis said. “My daughter was not going to die a teenager.”
Almost immediately, the Ellises began a decades-long crusade to find a cure for this cruel killer of kids. They made regular trips to the mainland to volunteer for events that raised money for cystic fibrosis research: bowl-a-thons, walkathons and the Pringles Light Tennis Classic, with Chris Evert and Martina Navratilova.
In 1988, they decided to put Gary’s fishing expertise to good use. They founded the Redbone Celebrity Tournament, running it from the kitchen table of their Islamorada home.
During a half day of bonefishing on the flats, Gary convinced his client and crusty friend Ted Williams, the Hall of Fame baseball great for the Boston Red Sox, to lend his name to the cause.
“Teddy Ballgame could put more expletives in one sentence than any living human being,” Gary said during a recent interview. “He told me: ‘I don’t [expletive] fish in [expletive] fishing tournaments.” I said: ‘It’s to save kids’ lives.’ I knew he had a big heart.”
Williams, a part-time Islamorada resident, went on to rant about how many fish the tournament would kill. “I quit killing fish,’’ he said. That’s the moment Gary decided it would be a catch-and-release tournament.
Williams autographed an artist’s sketch of himself. He wrote: “Save young lives, fish the Redbone for cystic fibrosis.” His name led to a slew of celebrities attending the inaugural event, including Curt Gowdy of American Sportsman; then-New York Mets manager Davey Johnson, now manager of the Washington Nationals; retired New York Yankees legend Joe DiMaggio; retired Boston Celtics star John Havlicek, and Phil Harris, the voice of Baloo the bear in Disney’s The Jungle Book.
The mission: to catch redfish, bonefish and “the cure for cystic fibrosis.”
Despite 25-mile-per-hour winds blowing out the torches during the outdoor kickoff dinner, the 33-boat tournament was a success, raising $16,000. Many of the celebrities wanted to return the next year. Soon, it grew to a trilogy series, with tournaments added in Key Largo and Key West. It got so crazy, with more than 90 boats registering for one tournament, that the boat entries were limited to 65.
“The number is significant,” Susan Ellis said. “Young children who have a difficult time pronouncing cystic fibrosis are taught to call their disease ‘sixty-five roses.’ ”
Many celebrities say they have been inspired by Nicole, whom they watched blossom from the adorable blond child who melted hearts at the early Redbone tournaments into a worldly young woman.
Some now host Redbone at-large tournaments, including former University of Miami and Denver Broncos lineman Mark Cooper (the Rocky Mountain Fly in Aspen, Colo.) and baseball Hall of Famer Wade Boggs (Crocodile Bay OSA Classic in Costa Rica). “We continue to carry the torch and fight for Nicole and everybody else,” Boggs said.
Under the Redbone banner, there are now 29 fishing tournaments in 11 states and four countries. Over the years, Army Gen. Norman Schwarzkopf, supermodel Lauren Hutton, late saxophonist Clarence Clemons, retired astronaut Bruce Melnick and NFL Hall of Famer Ted “the Mad Stork” Hendricks also fished the tournaments, which have raised more than $16 million for the Cystic Fibrosis Foundation.
“We hoped there would be a cure by now, but we won’t stop until there is one,” Susan Ellis said.
Take one look at Nicole today, a vivacious five-foot-two, 113-pound woman, and it’s impossible to imagine that her life has always been a daily struggle filled with long breathing treatments, zillions of pills for her digestive problems and physical therapy called “clapping” that requires pounding on her chest to break up the mucus buildup.
Now there are vibrating vests that replace the clapping. But it’s still an ordeal. Nicole needs to wear the vest for 30 to 45 minutes at least twice a day. She still has to do breathing treatments and take a regiment of pills.
At the recent 25th Redbone kickoff dinner, she was the guest speaker. She talked about a life that has included world travel, earning a master’s degree in business and working for the global frozen food empire Rich Products. She manages business development and marketing of the company’s brands in parts of South and Central America and the Caribbean. Her fluent Spanish, burnished during a college semester abroad in Spain, has come in handy.
“If her speech didn’t move you, nothing will,” said Johnson.
Johnson’s wife Susan agreed: “Davey and I both have lost kids, and we were floored to tears over her spirit. If it was me, I’d go to Costa Rica and sit on a beach and smoke pot. But she’s not doing that. She’s furthering her education and looking forward to her future.”
The efforts of the Ellises and the Cystic Fibrosis Foundation have been paying off slowly but surely. Medical advances have extended life expectancy for those with the disease to age 37.
Just this year, a “kind of miracle drug” called Kalydeco was approved by the FDA. It’s a breakthrough, the first drug to deal with the underlying causes of the disease and restore function of the protein the defective gene targets. While the drug helps people with only one particular mutation (about 4 percent of the CF population), scientists are excited that it can be adapted for other mutations.
“I’m confident we’re on the 20-yard line and it’s just a matter of time and money before we can manage the disease for the 100 percent, so people can live with CF and no longer die from it,” said Christina Landshut, executive director of the South Florida office of the Cystic Fibrosis Foundation for 27 years.
“But I look at Nicole, and I know the clock is ticking,” said Landshut, who has known the Ellis family for more than 25 years. “I look forward to the day we can celebrate the end of the disease with them. It’s scary to live with it.”
Nicole said she always has had hope: “I’ve never been left in the dark without any new drug or new therapy to try. But at the same time, my lung functioning still trends down.”
She recently spent 19 days in the hospital. She tried to keep up with her work, putting a do-not-disturb sign on her door when she was on Skype for a conference call with co-workers in South America.
“I have good days and bad days,” she said. “Some days, I think: ‘Whoa, why did I get my MBA if I have to go part time or cut back?’ But other times I see progress, with a new therapy coming out, and I think it will be in time for me to have my career and a family some day. I’m just at the mercy of how quickly the cure comes.”
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