Local events raise $40K for cystic fibrosis research

PARKERSBURG – Money raised by the Battle Against Cystic Fibrosis was given to the Cystic Fibrosis Foundation Thursday.

Kay Grose, president of the BACF Board of Directors, said the $40,000 donation was raised in three events, the all-star high school basketball game, the all-star high school football game and basket bingo.

“Since 1994 the Battle Against Cystic Fibrosis has donated almost $500,000 to the foundation,” she said. “All of this came from the Mid-Ohio Valley.”

Grose said the amount raised this year was the same as last year’s amount.

“We are delighted with that,” she said. “Given the current economy we are delighted the members of the communities in the Mid-Ohio Valley are continuing to support this effort and businesses are continuing to sponsor this effort to find a cure for cystic fibrosis.”

Grose said there is no cure for cystic fibrosis.

Wyatt Smith, a junior at Parkersburg South High School, has cystic fibrosis. He said the foundation helps those with the disease and their families.

“When I’ve been in hospitals for long stays, they have paid for things for me and my family,” he said. “It’s a great foundation that helps a lot of people with cystic fibrosis.”

Smith said the foundation helps families find places to stay if they are away from home while a family member is in the hospital and helps with other related needs.

Beth Denham, executive director of the Cystic Fibrosis Foundation, said 90 cents of each dollar raised by the foundation goes to research for a cure.

“We are proud of that; we are one of a few charities that can really boast of that percentage,” she said. “We are very conscientious with the money we spend and therefore we are able to put more toward research.”

Denham said in her five years with the Cystic Fibrosis Foundation, BACF has raised close to $250,000 for research.

Denham said the research has led to a drug to help some who have the disease.

“There is one new treatment that came out last year,” Denham said. “In 2012 Kalydeco was introduced. Unfortunately it only helps about three percent of our patients with a particular mutation of the disease. However, we are seeing incredible results with those who qualify.”

Denham said it is helping patients gain weight because the disease can inhibit the body’s ability to gain weight and it is providing for better lung function.

“Although it was developed for a specific mutation, it is having effects across all patients in terms of lung function and weight gain,” Denham said.

Denham said the development of Kalydeco may lead to other treatments against the disease.