Gen. H. Norman Schwarzkopf, Jr., shown here with a young CF patient Nicole Ellis, is one of hundreds of notables who have been a part of the Redbone Celebrity Fishing Tournaments across the U.S., Costa Rica, Mexico and the Bahamas, helping raise awareness and money for cystic fibrosis research. Now in its 25th year the Redbone has raised over $15 million for the CF Foundation which recently announced a major breakthrough towards a cure.
PUERTO JIMENIZ, Costa Rica and ISLAMORADA, Fla. USA — Hopefully there’s a lot to celebrate at the 25th anniversary of the Redbone Celebrity Fishing Tournament this November after a breakthrough announcement by the Cystic Fibrosis Foundation that the FDA had approved a pill that controls a CF gene mutation affecting a small population of patients with the life-threatening illness.
“The approval came earlier than we expected,” said an elated Capt. Gary Ellis upon hearing the statement from CFF researchers. “We may be just a couple of years away from the drug that cures a broader number of the CF victims, but it’s a huge step in the right direction and will be life-changing for so many patients and their families.”
Since 1984 when doctors discovered their newborn daughter Nicole had the genetic disease that slowly cripples the lungs and other organ functions, Ellis, a flats guide in the Florida Keys, with his wife Susan began volunteering for a wide range of CF fundraisers in South Fla. At the urging of the late baseball hall of famer Ted Williams then a Keys resident, the Ellis’s began the Redbone Celebrity Tournament to raise money for research with celebrity friends, anglers and guides that Williams attracted.
Their first effort in 1988 netted $16,000 and over the years has spring boarded a variety of some 30 yearly Redbone fishing events across the U.S., Mexico, Costa Rica and the Bahamas.
Costa Rica’s Crocodile Bay OSA Classic, March 17 -22 is one of those tournaments that is helping to raise money for medical research scientists to close in on a cure for CF.
Through the Ellis’s perseverance along with volunteers, anglers, guides, and celebrities the Redbone tournaments have raised over $15 million making an impact for this medical research.
“Some $75 million of outside funding like that raised by the Redbone events helped fund this newest breakthrough drug and parallel research,” said Baseball Hall of Famer Wade Boggs who has been involved with the Redbone since its beginning. “Back when this tournament started a child like Nicole with CF didn’t survive making it to junior high school.
“That life expectancy is now in the late 30’s,” added veteran Red Sox knuckleball pitcher Tim Wakefield, another popular and longtime Redbone celebrity angler. “It's amazing through research down this path we soon may see a cure for most all CF patients.”
Ellis said Kalydeco, the new twice-a-day pill developed by Vertex Pharmaceuticals will help correct a gene mutation in some1200 patients just 4% of the CF population in the U.S. “Researchers are on the right track giving hope to correct the gene defect affecting a broader (80%) portion of 30,000 CF patients in the U.S., like our daughter Nicole has as well as the other related gene mutations. Plus research like this has expanded to many other diseases.
“It’s obvious none of this science happens overnight but this news shines hope that these mutations can be dealt with through these new drugs,” said Ellis. “Many times through these 25 years we’ve had just a glimmer of hope. It’s been a long hard struggle and we’ll continue the fight. Hopefully at the end of this decade CF will stand for ‘Cure Found,’” he smiled.
The Redbone is unique as the non-profit also features the Redbone Gallery housing the largest collection of saltwater fishing art in Florida. Since the first tournaments, artwork by internationally known painters and sculptors has been awarded to winners of the tournaments.
For more information on the Redbone events please call Gary or Susan Ellis at 305-664-2002 or via e-mail at susan (at)redbone.org. Or visit the Redbone website.
Press Release submitted by Pete Johnson – PR counsel for The Redbone. Johnson Communications, Inc., Scottsdale, AZ 85254 Ph: 480-951-3654 e-mail: JohnsonCom(at)aol.com
Anything that has to do with fishing & kids I am for!
This is cool!