About
Facts About Cystic Fibrosis
Cystic fibrosis (CF) is a life-threatening genetic disease that affects the lungs and digestive systems of approximately 30,000 children and adults in the United States.
A defective gene causes the body to produce unusually thick, sticky mucus that clogs the airways and leads to life-threatening lung
infections, obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
More than 10 million Americans are unknowing, symptomless carriers of the defective CF gene; that is an average of 1 in every 31 people.
Most people find out they are a carrier after they come together and have a child with CF—there’s a 1 in 4 chance that two carriers will have a child with CF.
In the 1950s, few children with CF lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond. But that’s not good enough.
Try this: get a straw, plug your nose and breathe through the straw for 15 seconds or more. This is what it feels like to have CF on a good, healthy day. Now imagine the thousands of children and young adults who strive to live normal lives…we have runners, soccer players, wake boarders, gymnasts who, unless you knew how much work is happening behind the scenes to stay healthy, you would never know are living with CF.
About the Cystic Fibrosis Foundation
The mission of the Cystic Fibrosis Foundation, a nonprofit donor-supported organization, is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease.
The Cystic Fibrosis Foundation is one of the most efficient organizations of its kind and is an accredited charity of the Better Business Bureau’s Wise Giving Alliance.
The Foundation’s business model has been recognized by the National Institutes of Health and by publications such as Forbes, The New York Times, The Wall Street Journal and BusinessWeek.
Virtually every approved CF drug therapy available today was made possible because of the Foundation’s support.
Thanks to investments by the CF Foundation in CF research and care, the median predicted age of survival for people with the disease has doubled in the past 25 years.
B.cepacia Policy
Because of risks to people with cystic fibrosis (CF), individuals with a confirmed positive sputum culture for Burkholderia cepacia complex shall not attend this event. This is because B. cepacia can be passed between individuals who have CF through close proximity. B.cepacia infection in a person with CF can cause serious respiratory illness and, in some patients, may lead to death. Despite this policy, there still might be some individuals with B.cepacia in attendance. B.cepacia is not a risk for otherwise healthy individuals. For alternative ways to participate and for information about this policy, please contact the CF Foundation at (800) FIGHT-CF or visit our website at www.cff.org.