Huge Breakthrough in CF Gene Research; Redbone Celebrity Tournaments Perseveres with Fund-Raising Efforts in 25th Year
What do Buffalo, N.Y. and the Florida Keys have in common? Two great Redbone fishing tournaments for one, helping medical researchers get closer to finding a cure for cystic fibrosis…. and it may come soon.
Nearly 25 years ago the Redbone (short for redfish and bonefish, two popular saltwater fish species in the Florida Keys) began as a small local Keys’ fishing event, later growing into a series of nearly 30 tournaments with one of the venues on Lake Erie in Western New York.
In Buffalo on June 28 and 29, The 11th Annual Greater Niagara BassEye Celebrity Challenge takes place off the shores of Lake Erie. This Redbone @ Large tournament started by Bob and Mindy Rich of Rich Products kicks off Thursday evening at the Rich Renaissance Atrium, One Robert Rich Way with a reception, cocktail party and dinner featuring an amazing cuisine plus live and silent auctions.
The catch and release fishing competition for bass and walleye begins Friday morning at the NFTA Small Boat Harbor, with an awards reception held dockside. For more please call Gia Coone at the Western N.Y. CF Foundation office at 716-204-2535, via e-mail at [email protected] or go to the tournament website at http://www.basseye.com/ .
Redbone background; now closer to a cure
Hopefully there’s a lot to celebrate at the 25th anniversary of the Redbone Celebrity Fishing Tournament this November 2 – 4, after a recent 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. –like Lake Erie — Mexico, Costa Rica and the Bahamas.
Through the Ellis’s perseverance along with volunteers, anglers, guides, celebrities and CF Foundation offices like the one in Northern Ohio, the Redbone tournaments have raised over $16 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 former 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 all of the Redbone events please call Gary or Susan Ellis at 305-664-2002 or via e-mail at [email protected].