Our History

Faced with insurmountable odds, but determined to save the lives of their children, a group of concerned parents came together to form the Cystic Fibrosis Foundation.

At the time, very little was known about cystic fibrosis, but the tenacity and strength of CF families laid the groundwork for monumental progress in research, care, and treatment of a rare disease.

Watch what some parents have to say about their children who have CF.

Today, because of their foresight and the hard work and dedication of thousands of families and volunteers across the country, the CF Foundation is the world's leader in the search for a cure for cystic fibrosis. 

The Building Blocks of More Tomorrows

Since 1955, the CF Foundation has added decades to the lives of people with the disease. These gains are the direct result of advances in treatment and care made possible through our innovative business model, called venture philanthropy. 

By raising funds needed to fuel CF-specific drug development programs, we encourage pharmaceutical companies to invest in rare-disease research.

Virtually every approved CF drug available today was made possible with CF Foundation support.

Each new breakthrough is a building block that brings us closer to our ultimate goal: a cure for all people with CF.

Our successful philanthropy model has been covered by such prestigious publications as:

• Harvard Business Review
• Forbes
• The Wall Street Journal

Milestones

1955: The Cystic Fibrosis Foundation is formed by a group of concerned parents who are determined to save the lives of their children.

1961: The Foundation establishes an accredited care center network by creating two centers devoted to treating CF. 

1962: The median predicted age of survival is 10.

1965: Richard Weiss coins the term "65 Roses."

1966: The Cystic Fibrosis Foundation launches a patient data registry that collects health information of patients seen at Foundation-accredited care centers.

1970: The median predicted age of survival is 16.

1978: The number of Foundation-accredited care centers totals more than 100.

1980: The median predicted age of survival is 18.

1983: Sports writer, novelist, and former CF Foundation Chair Emeritus Frank Deford pens Alex: The Life of a Child, a memoir chronicling his daughter's brave fight against cystic fibrosis, giving a public face to this rare disease. 

1989: A team of Foundation-supported scientists discovers the defective cystic fibrosis transmembrane conductance regulator (CFTR) gene and its protein product years before the human genome is mapped. This discovery opens the door to understanding the disease at its most basic level. 

1989: The median predicted age of survival is 29.

Watch Francis Collins, who was part of the CFTR gene discovery team and is now the director of the National Institutes of Health (NIH), talk about the gene discovery 25 years later.

1993: The Food and Drug Administration (FDA) approves Pulmozyme^®, which is proven to thin the tenacious, sticky mucus in the lungs and is the first drug developed specifically for CF. The time taken to develop Pulmozyme is less than half of the industry average.

1997: The Foundation establishes the Therapeutics Development Program. The FDA approves TOBI^®, the first aerosolized antibiotic designed for CF, which is proven to reduce hospital stays and improve lung function.

2000: The median predicted age of survival is 32.

2004: Foundation-supported studies in Australia and at the University of North Carolina show that hypertonic saline helps clear CF mucus. It is proven to improve lung function and reduce hospital stays, and becomes a therapeutic option.

2006: One of the first oral drugs to work at the cellular level and attack the root cause of CF enters clinical trials (VX-770).

2006: The CF Congressional Caucus is launched by Reps. Edward Markey (D-Mass.) and Cliff Stearns (R-Fla.), and remains one of the largest congressional caucuses of its kind.

2007: The Foundation launches its first March on the Hill to help educate elected officials about the need for continued funding for the NIH, the FDA, and other drug development and research programs.

2008: During Phase 2 studies of oral compound, VX-770, trial participants show an increase in lung function and improvements in overall health and well being, proving that it is possible to treat the root cause of CF.

2010: The FDA approves a new inhaled antibiotic to treat CF lung infections. This new therapy is a much-needed alternative to antibiotics for CF patients who battle recurrent infections and develop resistance to existing antibiotics.

2010: The Foundation raises $175 million through the Milestones campaign -- a goal that fundraising industry advisers said would be impossible for a health care nonprofit to reach. 

2011: Phase 3 clinical trials of ivacaftor (formerly VX-770) show profound results. Those receiving the drug demonstrate the highest increase on a lung function test seen in any clinical trial of a CF drug. A New Drug Application is submitted to the FDA for ivacaftor under the trade name Kalydeco^®.

2012: The FDA approves ivacaftor (Kalydeco^®) for a small group of people with CF ages 6 and older. The drug is the first to address the underlying cause of CF and opens exciting new doors to research and development that may lead to a cure for all people living with the disease. 

2013: Two large international Phase 3 trials of ivacaftor, in combination with lumacaftor (formerly VX-809) in people with two copies of the most common CF mutation, begin.

2013: The Metropolitan Washington, D.C. Chapter's Breath of Life Gala raises $3.3 million, marking the single largest night of fundraising in the Foundation's history.

2014: The FDA approves ivacaftor as a single therapy to treat people ages 6 and older with one of eight rare CF mutations in addition to G551D.

2015: The FDA approves the lumacaftor/ivacaftor (Orkambi^®) combination drug for people ages 12 and older who have two copies of the most common CF mutation, F508del -- representing about a third of those with CF in the United States.

2016: The FDA approves the lumacaftor/ivacaftor for children with CF ages 6 to 11 who have two copies of the F508del mutation. The decision means that about 2,400 additional children in the U.S. are eligible to receive the drug, bringing the total number of those eligible for the treatment in the U.S. to nearly 11,000.

2017: Two Phase 3 clinical trials of tezacaftor (VX-661) in combination with ivacaftor demonstrate positive results not only for people with two copies of the F508del mutation, but also for those who have one F508del mutation and a second mutation that results in residual function.

2017: The FDA expands the use of ivacaftor to people ages 2 and older who have at least one of 23 residual function mutations in the CFTR gene. The FDA's consideration of laboratory evidence coupled with clinical data to address the needs of people with CF who have less common mutations is an important step forward for the CF community.

2018: The FDA approves tezacaftor/ivacaftor (Symdeko^®) combination therapy for people with CF ages 12 and older who have two copies of the F508del mutation, providing another option for people in this population, particularly individuals who cannot tolerate lumacaftor/ivacaftor (Orkambi®). In addition, tezacaftor/ivacaftor is approved for individuals who have a single copy of one of 26 specified mutations – regardless of their other mutation.

2018: The FDA expands the use of lumacaftor/ivacaftor (Orkambi^®) to children with CF ages 2 to 5 who have two copies of the F508del mutation. The decision means that about 1,300 additional children in the U.S. are eligible to receive the drug.

2019: Two Phase 3 clinical trials of elexacaftor (VX-445) in combination with tezacaftor/ivacaftor (Symdeko^®) demonstrate dramatic improvements in key measures of the disease for people with one or two copies of the F508del mutation. Importantly, clinical trial participants with two copies of F508del experience a 10 percent increase in lung function compared to treatment with the modulator tezacaftor/ivacaftor (Symdeko^®) alone, indicating that the new triple combination therapy has the potential to be significantly more effective than previous two-drug combinations.

2019: The FDA approves the use of ivacaftor (Kalydeco^®) for babies with CF as young as 6 months old who have certain mutations. Clinical trial data indicate that starting on modulators at a young age has the potential to help slow or even prevent progression of the disease.

2019: The FDA approves the use of tezacaftor/ivacaftor (Symdeko^®) for children with CF ages 6 to 11 who have two copies of the F508del mutation or a single copy of one of 26 specified mutations. The expansion means that an additional 2,000 children now qualify for the drug.

2019: The FDA approves the triple-combination modulator elexacaftor/tezacaftor/ivacaftor (Trikafta™) for people with CF ages 12 and older who have at least one copy of the F508del mutation, regardless of their other mutation. This historic breakthrough means that for the first time the majority of the CF population could eventually have a highly effective therapy for the underlying cause of their disease.

2020: The Foundation maintains a robust pipeline of potential therapies that target the disease from every angle. The more drugs in the pipeline, the greater the odds of producing successful therapies and a cure for all people with CF.