One in 39,000 births results in CF case

Cystic fibrosis is a genetic disease that most parents don't even realize they are carriers of, until their children are diagnosed.

Both parents must be carriers of the cystic fibrosis gene in order for a child to be afflicted, meaning it can be generations before it shows up in a family.

"It's really hard to trace back to where it first gets into the family history," said Mary Ann Johnson, who has lost three siblings to CF. "Generally, children are diagnosed by age three, and that's the first indication parents are the carriers."

According to the Cystic Fibrosis Foundation, the disease shows up in approximately one in 3,900 live births in the United States. There are approximately 30,000 children and adults living with CF in the country. And while most are diagnosed by age three, almost eight percent of new cases last year were diagnosed in people over the age of 18.

While one in 39,000 births results in a CF case, more than 10 million Americans carry the gene -- one in 31 people. The defective gene was discovered in 1989, and since then, research has increased dramatically as scientists look for a cure.

"I hope I see it in my lifetime," Johnson said.

The defective gene causes the body to produce a thick, sticky mucus, which leads to chronic and life-threatening lung infections. Digestion is also impaired in many patients' cases.

There are 95 foundations around the country, but none in Alaska. The only cystic fibrosis clinic in Alaska is at Providence Alaska Medical Center, and it is supported through the national foundation and the Washington chapter.

"It takes about $100,000 in fund-raising for three consecutive years to get a foundation started," Johnson explained. "The Cystic Fibrosis Foundation is one of the best nonprofits in that 90 percent of the money goes directly to research and development."