When the Cystic Fibrosis Foundation was established in 1955, people born with the disease weren’t expected to live to attend elementary school. 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.
Today, because of our progress in research and drug development and high-quality, specialized care, people with CF are living into their 30s, 40s, and beyond. Read about the incredible journey to cure cystic fibrosis.
1938: Dorothy Andersen, MD, publishes the first characterization of a disease mysteriously taking the lives of children: cystic fibrosis.
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.
1966: The Cystic Fibrosis Foundation launches a patient data registry that collects health information of patients seen at Foundation-accredited care centers. The CF Patient Registry today is a best-in-class resource that has driven progress in CF care and research and has become a model for other disease registries.
1989: A team of Foundation-supported scientists discovers the defective cystic fibrosis transmembrane conductance regulator (CFTR) gene and its protein product. This discovery opens the door to understanding the disease at its most basic level.
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 Foundation provided early stage funding that helped bring the drug to market.
1997: The Foundation establishes the Therapeutics Development Program, which provides funding during the early phase of drug discovery and development, when the risk for failure is greatest and companies are the most hesitant to invest.
1997: The FDA approves TOBI®, the first aerosolized antibiotic designed for CF, which is proven to reduce hospital stays and improve lung function.
1998: The Therapeutics Development Network is established with the designation of specialized clinical research centers. This became the seed for the largest CF clinical trial network in the world.
2000: The Foundation invests $40 million – the first large investment in a company – in Aurora Biosciences, later Vertex Pharmaceuticals, to fund development of what would become the first therapies to treat the underlying cause of CF. This marks the first major test of the Foundation’s venture philanthropy model.
2006: Supported by the Foundation, one of the first oral drugs to work at the cellular level and attack the root cause of CF enters clinical trials. It would later be known as ivacaftor (Kalydeco®).
2006: The CF Congressional Caucus is launched by Reps. Edward Markey (D-Mass.) and Cliff Stearns (R-Fla.), and becomes one of the largest congressional caucuses of its kind.
2007: The Foundation launches March on the Hill to educate elected officials about the need for continued funding for the NIH, the FDA, and other drug development and research programs. In 2009, the Foundation's Teen Advocacy Day launches, bringing teens from across the country to advocate for their loved ones with CF. Both flagship events are part of the Foundation's critical advocacy program.
2010: The FDA approves a new inhaled antibiotic, aztreonam for inhalation solution (Cayston®), 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: Universal newborn screening for cystic fibrosis is instituted in all 50 states. Diagnosis at an early age is critical to establishing care.
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.
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.
2012: The Foundation establishes the Cystic Fibrosis Foundation Therapeutics Lab, a one-of-a-kind CF research facility that conducts groundbreaking CF research to rapidly advance new therapies.
2014: The CF Foundation sells royalty rights for CF treatments developed by Vertex for $3.3 billion – bringing resources to the fight against CF never thought possible.
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: CF Foundation Compass is established, a personalized service to help with the insurance, financial, legal, and other issues faced by anyone with cystic fibrosis, their family, and their care teams.
2016: To better address the needs of the growing adult CF population, the Foundation establishes a new department focused on listening to, supporting, and partnering with the CF community. This includes collaborative programs to create virtual conferences, use community insights to actively shape research and programs, offer peer support, and fund ideas that impact the broader CF community.
2017: The Foundation launches the Lung Transplant Initiative, an effort to improve outcomes for people with CF who undergo lung transplantation.
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). Later, tezacaftor/ivacaftor is approved for individuals who have a single copy of one of 26 specified mutations – regardless of their other mutation.
2018: The CF Foundation launches the Infection Research Initiative, a comprehensive, $100 million effort to improve the detection, diagnosis, treatment, and outcomes of CF-related infections
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.
Watch members of the CF community react to the FDA approval of Trikafta in children ages 6-11.
2019: The Foundation launches its Path to a Cure, a $500 million research portfolio to accelerate treatments for all people with CF, including those who do not yet have a transformative treatment for their disease.
2020: Despite the challenges brought on by the COVID-19 global pandemic, the CF Foundation funds more in research and care in 2020 than at any other time in the history of its mission.