• What is Cystic Fibrosis?
• How Common is CF?
• How Do You Know if You or Your Child Has CF?
• What Can You Do If You Have CF?
• What Does CFRI Do About CF?
• How Can You Assist CFRI?

• Cystic fibrosis (CF) is the most common, fatal hereditary disease in the U.S.
• CF is a disorder of the cells that line the lungs, small intestines, sweat glands and pancreas. Sticky, thick mucus contributes to the destruction of lung tissue and impedes gas exchange in the lungs. It also prevents nutrient absorption in the small intestines, and blocks pancreatic ducts from releasing digestive enzymes. Approximately 85% of all people with CF cannot properly digest their food without supplemental enzymes.
• People with CF exhibit some or all of these common symptoms, to varying degrees:

• Anywhere from 25,000 to 30,000 American children and adults have CF.
• One in 3,900 American children is born with CF.
• Approximately 1,000 new cases are diagnosed each year. Improved diagnostic techniques have resulted in newly identified cases in people of all ages.
• Ten million Americans are symptomless carriers of the CF gene.
• At present, only half of those with CF survive to age 36.8.

• Review the list of symptoms as described in this fact sheet.
• If you or your child has most of the symptoms indicated, you should ask your doctor about having a "sweat test." The sweat chloride test is a reliable tool for diagnosing cystic fibrosis. This simple, painless test measures the amount of salt in the sweat. A high level of salt indicates that a person has CF. Recently developed genetic techniques using DNA analysis can be definitive when positive, but because hundreds of alleles can cause CF, no single genetic test works in all cases.

• Contact your physician immediately and follow the medical advice you are given.
• Become educated about the disease. Attend support groups, conferences, educational meetings, and read newsletters that are available through CFRI.
• Don’t become discouraged. Many new advances in research provide hope for all who have this disease. Scientists have discovered the gene that causes CF and gene therapy research is moving forward. While there is no cure for CF at present, many recent developments in medicine such as a new drug that reduces infections by breaking up thick mucus accumulations make it easier for people to live their lives with this disease.

• CFRI is an independent, nonprofit volunteer organization that is dedicated to saving the lives of children and adults with cystic fibrosis. We were founded in 1975 in order to fund life-saving research and sponsor educational programs.
• Since our founding in 1975, CFRI has funded over $7.5 million toward cystic fibrosis research projects. Our educational program includes publishing a CFRI newsletter and educational brochures that are circulated to 14,000 readers throughout the world. We hold support meetings and talks on CF research and living with CF. CFRI also sponsors an annual educational conference for the CF community, as well as a summer retreat for young people and adults with CF.

• Volunteer to help us raise funds for our research and educational programs.
• Participate in our major fundraising events, such as the annual golf tournament or our Mother’s Day Tea solicitation.
• Contribute funds to support the significant research that is taking place in universities and research centers throughout the United States.

 Click Here