The Cystic Fibrosis Foundation (CFF) is a

501(c)(3) A 501(c)(3) organization is a United States corporation, trust, unincorporated association or other type of organization exempt from federal income tax under section 501(c)(3) of Title 26 of the United States Code. It is one of the 29 types of 50 ...

non-profit organization A nonprofit organization (NPO) or non-profit organisation, also known as a non-business entity, not-for-profit organization, or nonprofit institution, is a legal entity organized and operated for a collective, public or social benefit, in co ...

in the

United States The United States of America (U.S.A. or USA), commonly known as the United States (U.S. or US) or America, is a country primarily located in North America. It consists of 50 states, a federal district, five major unincorporated territorie ...

established to provide the means to cure

cystic fibrosis Cystic fibrosis (CF) is a rare genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys, and intestine. Long-term issues include difficulty breathing and coughing up mucus as a result of frequent lung infections. O ...

(CF) and ensure that those living with CF live long and productive lives. The Foundation provides information about cystic fibrosis and finances CF research that aims to improve the quality of life for people with the disease. The Foundation also engages in legislative lobbying for cystic fibrosis.

History

The Foundation was established in 1955 by a group of volunteers in

Philadelphia, Pennsylvania Philadelphia, often called Philly, is the largest city in the Commonwealth of Pennsylvania, the sixth-largest city in the U.S., the second-largest city in both the Northeast megalopolis and Mid-Atlantic regions after New York City. Sinc ...

. In addition to providing

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for research into cystic fibrosis and supporting clinical trials, the foundation promotes and accredits 115 specialized centers for treatment of individuals with cystic fibrosis. The Foundation has over 80 chapters and offices across the United States. Before it began using the current name, the organization was known as the "National Cystic Fibrosis Research Foundation". In 1989, scientists working for the Cystic Fibrosis Foundation discovered the gene that causes cystic fibrosis, considered the key to developing a cure for cystic fibrosis. From 1982 until 1999, sports journalist

Frank Deford Benjamin Franklin Deford III (December 16, 1938 – May 28, 2017) was an American sportswriter and novelist. From 1980 until his death in 2017, he was a regular sports commentator on NPR's ''Morning Edition'' radio program. Deford wrote fo ...

served as

chairman The chairperson, also chairman, chairwoman or chair, is the presiding officer of an organized group such as a board, committee, or deliberative assembly. The person holding the office, who is typically elected or appointed by members of the grou ...

of the Foundation. The Cystic Fibrosis Foundation has been a pioneer of cystic fibrosis treatment, having played a major role in the development and use of five FDA-approved therapies, including

ivacaftor Ivacaftor is a medication used to treat cystic fibrosis in people with certain mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene (primarily the G551D mutation), who account for 4–5% cases of cystic fibrosis. It ...

(Kalydeco). The latest FDA approved drug is

Trikafta Elexacaftor/tezacaftor/ivacaftor, sold under the brand names Trikafta (US) and Kaftrio (EU), is a fixed-dose combination medication used to treat cystic fibrosis. Elexacaftor/tezacaftor/ivacaftor is composed of a combination of ivacaftor, a c ...

, which was passed by the FDA in 54 days and is able to help up to 90% of CF patients. In 2014, the Cystic Fibrosis Foundation sold the rights to the royalties of the drugs for $3.3 billion, twenty times the Foundation's 2013 budget. In April 2022, the Foundation announced a $5 million investment to life science treatment company Sionna Therapeutics, for the development of a new cystic fibrosis transmembrane conductance regulator (CFTR) modulators, a type of therapy that treats the underlying cause of CF.

Present day

Currently the Foundation operates out of Bethesda, Maryland. Michael P. Boyle, M.D. is the active president and CEO of the organization. At the end of 2019, Preston Campbell, M.D., retired as CEO. The Foundation is devised into many different departments including Public Policy and Advocacy, Communications, and Fundraising. The Compass program is a service that provides patients and families with support for financial, legal, and insurance issues, particularly to get insurance coverage for the various medications they need to survive.

Events

The Foundation hosts several philanthropic events both locally around the chapters and nationwide. One of the biggest signature events is the Great Strides walk, established in 1989. It is a sponsored walk akin to

Race for the Cure Susan G. Komen (formerly known as Susan G. Komen for the Cure; originally as The Susan G. Komen Breast Cancer Foundation; often simply as Komen) is a breast cancer organization in the United States. Komen focuses on patient navigation and advo ...

, where participants walk to raise money to support research for cystic fibrosis. There are Great Strides walks in over 560 locations throughout the country. Great Strides has succeeded in raising over $180,000,000 for cystic fibrosis research. Some other signature events include the CF Cycle for Life, CF Climb, Xtreme Hike, and Team CF. The list of national events includes Ultimate Golf Experience,

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Celebrity Ski, and Volunteer Leadership Conference. Individual chapters may host their own events which may include, but are not limited to, fishing events, dinner dance events, golf tournaments, and finest events. The Foundation also hosts numerous advocacy events such as March on the Hill, state advocacy days, and Teen Advocacy Day allowing those with cystic fibrosis and their loved ones to speak their voice to those who represent them. In 2016, the Foundation hosted its first virtual event for adults with CF, BreatheCon. The purpose of making the event virtual was to address the concerns of potential cross-infection among people living with cystic fibrosis who interact in person. Since the first BreatheCon, the Foundation has hosted several other virtual events dedicated to connecting the community, including FamilyCon and ResearchCon.

References

External links

* Health charities in the United States Cystic fibrosis organizations Organizations established in 1955 1955 establishments in Pennsylvania Medical and health organizations based in Maryland {{US-philanthropy-org-stub