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Bowlers take aim at the inherited, chronic disease cystic fibrosis this month as part of the 24th-annual Bowl for Breath at Creole Lanes in Houma.
Organizers are rolling out the red carpet for the event, themed “Hooray for Hollywood.” Attendees are encouraged to wear costumes that represent Tinseltown, with the traditional contest ceding an Oscar to the best dressed.
Ashley Mills, executive director of the Cystic Fibrosis Foundation’s Louisiana Chapter, the event’s organizer, said she anticipates up to 200 people to show up.
“We take over the whole bowling alley, and we fill the lanes,” she said.
A minimum donation of $25 secures three games of bowling, shoes included, a T-shirt and entry in the door-prize pool. The alley’s concession stand is fully operational, raffle tickets are sold and the lights dim for a period of “Cosmic Bowling.”
Proceeds benefit the CF Foundation Louisiana Chapter.
“Our mission is to fund research and medical treatment for CF,” Mills said. “A lot of our money goes toward large research projects and helps fund a care center at Tulane, which focuses on CF specifically. … 90 cents of every dollar that we raise funds that research. We have very low operating costs and make the best use of people’s money.”
Stemming from a defective gene that causes the body to produce thick mucus, CF causes life-threatening respiratory and digestive problems. A cure has not yet been found for the 30,000 people diagnosed in the United States, whose predicted median age of survival is 41, according to the Cystic Fibrosis Foundation, and more than 10 million Americans are symptomless carriers of the defective gene.
It’s a disease that hits home locally, as the Bayou Region has the most cases per capita in the country, according to Mills.
“It’s a genetic disease and in the bayou area, people come and stay,” Mills said. “You don’t have a lot of migration in and out of the area,” and the per-capita rate is bolstered by a relatively low population.
Advocates continue their work toward making symptom-treating drugs available to patients – and on a larger scale, developing a cure.
Last year the Food and Drug Administration approved the drug Kalydeco. It corrects the defective gene in 4 percent of the CF population, though it is not a cure. In essence, people will die with CF and not of CF, according to a press release.
Kalydeco was developed by Vertex Parmaceuticals Inc. in collaboration with the CF Foundation, which provided $75 million to the company’s CF program.
A similar drug that would reach at least 80 percent of the cystic fibrosis population is in the final stages of FDA testing.
Bowl for Breath runs from 11 a.m. to 2 p.m., Dec. 7 at Creole Lanes, 1371 W. Tunnel Blvd., Houma. For more information, visit www.louisiana.cff.org/bowlforbreath.
Pins are set to be knocked down at Creole Lanes in Houma, where the Cystic Fibrosis Foundation’s Louisiana Chapter holds its 24th-annual “Bowl for Breath” Dec. 7. The event funds research for the inherited, chronic disease diagnosed in 30,000 Americans.
