Media FAQs

What is cystic fibrosis?

Cystic fibrosis is a rare and fatal genetic disease. About 30,000 people in the United States and 70,000 people worldwide have CF. The defective CF gene and its protein product causes persistent and debilitating lung infections that often lead to premature death. It also stops the absorption of food leading to poor growth. The predicted median age of survival for CF has doubled in the past 30 years as a result of CF Foundation-driven improvements in research and care. Learn more about the disease.

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What is the Cystic Fibrosis Foundation?

The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for cystic fibrosis. The Foundation funds more CF research than any other organization, and nearly every CF drug available today was made possible because of Foundation support. Based in Bethesda, Md., the Foundation supports and accredits a national care center network that has been recognized by the National Institutes of Health as a model of care for a chronic disease. The CF Foundation is a donor-supported nonprofit organization, founded in 1955 by parents of children with cystic fibrosis. Learn more about the Foundation

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Who leads the Foundation?

Robert J. Beall, Ph.D., is president and CEO of the Cystic Fibrosis Foundation. He joined the Foundation in 1980 as executive vice president of medical affairs, and became president and CEO in 1994. Dr. Beall has led the Foundation’s successful efforts to radically change the course of this disease. He pioneered the organization’s unique drug development model -- “venture philanthropy” -- which has led to unprecedented advances in life expectancy and quality of life for people with CF. Learn more about Dr. Beall and his leadership.

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What makes the Foundation’s drug development model work? 

The Foundation’s successful drug development model, known as “venture philanthropy,” has led to tremendous advances in life expectancy, which has doubled in the last 30 years. By providing targeted funding to biotechnology and pharmaceutical companies to support development of new drugs for CF, the Foundation has ensured that this rare disease is not ignored. The Foundation’s model has been widely emulated by many other disease organizations and recognized by leaders in medicine, business and health care and patient advocacy. Learn more about the Foundation’s drug development pipeline.

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Where does the Foundation get its funding?

The Cystic Fibrosis Foundation is supported by donations from individuals and corporations and does not receive any federal funding. Across the country, the Foundation has 70 chapters and offices that work diligently to raise funds and support the search for a cure. The Foundation also receives a robust return on investment from its drug development model, known as “venture philanthropy,” and has a proven track record of using these funds to expand its robust pipeline of potential CF therapies.

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Updated: 2/18/2015