An estimated 30,000 Americans have cystic fibrosis, making it a rare disease.
For Tucsonan Kristina Quesada, it's no rarity but an everyday fact of life, since she found out that she and her husband carry a gene that increases the likelihood of their having a child with the disease. Their 1-year-old daughter, Ellis, has cystic fibrosis and requires constant attention.
"We treat her every day about half an hour in the morning and half an hour at night to clear the mucous in her lungs, and then every time she eats she has to take medication to absorb the nutrients that she's eating from her food, so she takes about 20 pills a day," Quesada says.
Cystic fibrosis is a chronic disease that affects the respiratory and digestive systems.
The Cystic Fibrosis Foundation is working to find more effective medicines and even a cure.
Michel Murphy is the executive director of the group's Southern Arizona office. She's optimistic about ongoing progress, including being part of the first non-profit to partner with pharmaceutical companies.
"And as a result the first drug to treat the underlying causes of cystic fibrosis was approved by the FDA this year," Murphy says.
"And it's an exciting breakthrough. It will dramatically change the lives for about 4 percent of those living with cystic fibrosis. It treats only one of the genetic mutations. Fortunately it's the one that Ellis has so it's going to make a dramatic difference in their lives but we're right on the brink of accomplishing the same thing for everyone else," she adds.
Murphy and Quesada are working with other people to put together a fundraiser on Saturday.
It's called the "Breath of Life Gala" and it's an annual event that is being held at Loews Ventana Canyon Resort this year.