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 Foundation is the leading organization in the United States devoted to cystic fibrosis. It funds and accredits more than 115 CF care centers nation wide with three major care centers in NC. 

The Cystic Fibrosis Foundation is one of the most efficient organizations of its kind with nearly 90 cents of every dollar donated invested in vital research and patient care. It has received a four-star rating for sound fiscal management from Charity Navigator, the largest independent charity evaluator in the United States 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.

Visit the Cystic Fibrosis Foundation's website at www.cff.org. 



The Cystic Fibrosis Foundation is... Hope in Action
Until we conquer this disease, our team will work tirelessly to extend and enhance life for those with cystic fibrosis by functioning as:  
  • Scientific pioneers, blazing new trails in CF research
  • Fundraisers, securing the money needed to support our efforts
  • Advocates, keeping CF a top priority in government, industry and research
  • Caregivers, linking patients and families to specialized CF care
  • Family, offering support, information and resource


The Cystic Fibrosis Foundation is... Building on Success
When the Foundation was established in 1955, children with CF were not expected to live long enough to attend elementary school. Due in large part to the Foundation's aggressive investments in innovative research and comprehensive care, the predicted median survival age for people with this disease is now more than 37 years. In 1989, CF Foundation-supported scientists discovered the defective gene that causes cystic fibrosis—a monumental breakthrough on the road to a cure. The Foundation has played an integral role in the development and FDA approval of four therapies that are now a routine part of treatment regimens for many with CF. The Foundation is actively supporting more than 30 potential new treatments currently in development—that's more than in the entire history of the disease. Our challenge is to find enough patients to join clinical trials to keep the research moving forward.

 

What Is Cystic Fibrosis?


Cystic fibrosis is an inherited chronic genetic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

  • clogs the lungs and leads to life-threatening lung infections; and
  • obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.


In the 1950s, few children with cystic fibrosis 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.


Symptoms of Cystic Fibrosis

People with CF can have a variety of symptoms, including:

  • very salty-tasting skin
  • persistent coughing, at times with phlegm
  • frequent lung infections
  • wheezing or shortness of breath
  • poor growth/weight gain in spite of a good appetite
  • frequent greasy, bulky stools or difficulty in bowel movements

Statistics

  • About 1,000 new cases of cystic fibrosis are diagnosed each year
  • More than 70% of patients are diagnosed by age two
  • More than 40% of the CF patient population is age 18 or older
  • The predicted median age of survival for a person with CF is more than 37 years

 

 
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