THE ELLIS FAMILY
The Ellis family, Gary, Susan, and Nicole personifies what makes Islamorada an awe-inspiring place to call home.
Gary Ellis was a handsome model looking for a career change and happened upon the Florida Keys where his first job was at Rotten Ralph’s at the Chesapeake. And it was there that he met fishing legend, Skip Bradeen. Skip hired him as a mate allowing him to log hours on the water before he got a captain’s license. It didn’t take long for Gary to fall in love with the gentle waters of Florida Bay and he began a career as a back country guide.
Gary met a local girl, Susan Sheppard. They married and soon had a darling baby girl, Nicole. They were certainly on their way to a dream life in paradise. But, they learned that precious Nicole had a serious genetic disease, cystic fibrosis, and there was no cure. Patients with cystic fibrosis, a disease that impacts the lungs, rarely lived beyond childhood.
Susan and Gary went to work to assure that Nicole and all the other children suffering this type of fate were given every chance possible to have a better future than what was projected. They put every ounce of their energy, heart and soul, into fundraising efforts for cystic fibrosis research. And thus in 1988, with the help of everyone they could mobilize, the Redbone Celebrity Fishing Tournament Series was founded with the goal of catching the cure for cystic fibrosis.
Not only did they create a mechanism to raise critical research funds, they helped educate our community and the world about the plight of children like their precious Nicole, who charmed the town with her smile and made the battle so very real.
Since 1988, and the first Redbone tournament, the organization has grown. There are now more than 20 tournaments in the series from coast to coast and in Mexico and Belize. The organization has contributed more than $26 million to cystic fibrosis research in the last eight years alone.
Sadly, Gary died in February 2020. Click here to see the story of his life as told in his obituary.
How about Nicole?
She is now 36 years old, married, working and living in New York.
Life has not been easy, for Nicole has had a lifetime of medical treatments, medication, and hospitalizations, but always faced with hope and optimism.
The research has worked. And the Redbone organization has been a huge help with the effort. In 2019, the FDA approved a new drug for cystic fibrosis patients: Trikafta. Nicole started using the new drug in November of 2019. While the drug is not a cure, 90% of the patients using it are able to breathe much better almost immediately.
Nicole had amazing results from Trikafta after just one month. She wanted to see the smile on her parents’ faces when she told them how well it made her feel and breathe. She presented them with a framed gift for Christmas 2019 with news articles and her latest lung function test results. Written on the gift in her writing – “We did it!”
Nicole summed up her gratitude saying “For my parents and for our Redbone family, Trikafta is a milestone accomplishment. My love and gratitude to my parents and all those that have rallied by their side to give CF fighters a full life is immense.”
Nicole was in Islamorada last February when her dad died. Certainly at high risk with her serious lung issues, because of the COVID concerns in early March of 2020, she hunkered down here in Islamorada. A neighbor moved in with friends, providing her home to Nicole so she would have a place to stay isolated from everyone, including her mom, Susan.
By the end of May, Nicole was venturing cautiously out of hiding on Lower Matecumbe to run along the bike path, training to run a 5k!
According to Nicole, “Trikafta is running. Running like I have never been able to run, as if it’s a super power I’ve just discovered.”
Nicole has returned to New York but is still well-isolated just in case.
And so it is that all of Islamorada can look to the Ellis family and know that through their years and years of diligent efforts and with the help of so many in our community, cystic fibrosis patients around the globe can breathe better tonight.