What is Cystic Fibrosis?

What is Cystic Fibrosis

Cystic fibrosis is an inherited chronic 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.

 

Who is 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, 95 adult care programs and 50 affiliate programs, and more than 75 chapters and branch offices nationwide.

The Cystic Fibrosis Foundation is one of the most efficient organizations of its kind. 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.

 

How Do I Get Involved? 

If you would like more information about the different ways in which you can volunteer and raise funds for the Delaware Valley Chapter of the Cystic Fibrosis Foundation please call 610.325.6001 or email us at del-valley.cff.org.

 

This is a non-smoking event

 

b.cepacia statement

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 might still 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 Web site at www.cff.org.  Consult your CF care center physician with medical questions.

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