Here are answers to some of the most commonly asked questions from members of the media.
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 CF.
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What makes the Foundation unique?
The Cystic Fibrosis Foundation was the first voluntary health organization to develop a successful “venture philanthropy” business model as a way to drive drug development for a rare disease. The business model is responsible for creating a drug development pipeline with nearly 30 promising therapies for CF — a unique accomplishment for a rare disease. The Foundation’s model has been featured in Forbes, The New Yorker and Bloomberg Businessweek, among other leading media outlets.
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Who leads the Foundation?
Robert J. Beall, Ph.D., is president and CEO of the Cystic Fibrosis Foundation. Dr. Beall joined the Foundation in 1980 as executive vice president of medical affairs, and became president and CEO in 1994. Under Dr. Beall’s leadership, the Foundation has become recognized for its pioneering and successful approach to the development of new drugs for cystic fibrosis.
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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 and ten million Americans are symptomless carriers of a defective CF gene. The disease causes the body to produce tenacious secretions that clog the lungs and lead to persistent lung infections and premature death. CF also obstructs the pancreas and interferes with the absorption of food and normal growth. The predicted median age of survival for CF is in the mid-30s.
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What is the prognosis for people with CF?
The outlook for people with CF continues to improve each year as a result of programs fueled by the Cystic Fibrosis Foundation. In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, many people with the disease can expect to live into their 30s, 40s and beyond. However, the disease is still fatal and on average, about one person a day dies from CF in the United States.
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Where does the Foundation get its funding?
The Cystic Fibrosis Foundation is solely supported by donations from individuals and corporations. The Foundation has a grassroots network of about 250,000 fundraising volunteers nationwide that support the Foundation’s 80 chapters and branch offices. Donations to the Foundation go to help support the development of new therapies for CF and ultimately a cure.
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