Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation (CFF) is a 501(c)(3) non-profit organization in the United States established to provide the means to cure cystic fibrosis (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.[7]
 | |
| Founded | December 16, 1955[1] |
|---|---|
| 13-1930701[2] | |
| Legal status | 501(c)(3) nonprofit organization[3] |
| Focus | Cystic fibrosis |
| Location | |
Chair, Board of Trustees | Catherine C. McLoud[4] |
President, Chief Executive Officer | Preston W. Campbell, III, M.D.[4] |
Chair, Adult Advisory Council | KC White[5] |
| Subsidiaries | Cystic Fibrosis Patient Assistance Foundation, Cystic Fibrosis Foundation Therapeutics[2] |
Revenue (2016) | $192,528,975[2] |
| Expenses (2016) | $299,650,531[2] |
Employees (2016) | 731[2] |
Volunteers (2016) | 250,000[2] |
| Website | www |
Formerly called | National Cystic Fibrosis Research Foundation[6] |
History
The Foundation was established in 1955 by a group of volunteers in Philadelphia, Pennsylvania.
In addition to providing grants 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".[6]
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 served as chairman 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 (Kalydeco).[7] The latest FDA approved drug is Trikafta, which was passed by the FDA in 54 days and is able to help up to 90% of the cystic fibrosis community.
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.[8][9]
Present day
Currently the Foundation operates out of Bethesda, Maryland. Preston Campbell, M.D. is the active president and CEO of the organization.[10] At the end of 2019, Preston Campbell, M.D., will be retiring. Michael Boyle, M.D., who is currently serving as the senior vice president at the Foundation, will be taking over Campbell's job in the new year.[11] The Foundation is devised into many different departments including Public Policy and Advocacy, Communication, Great Strides and a program called Compass. Compass is an advocate for patients and their families as they struggle with insurance to get the amount of coverage and various medications they need to survive. [12]
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, where participants walk 10 kilometers (6.2 mi) 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, American Airlines 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.[13]
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.[14]
References
- "Cystic Fibrosis Foundation". Entity Search. Division of Corporations. Delaware Department of State. Retrieved May 6, 2018.
- "Form 990: Return of Organization Exempt from Income Tax". Cystic Fibrosis Foundation. Guidestar. December 31, 2016.
- "Cystic Fibrosis Foundation". Exempt Organization Search. Internal Revenue Service. Retrieved May 6, 2018.
- "Board of Trustees". Cystic Fibrosis Foundation. Retrieved May 6, 2018.
- "Advisory Council". Cystic Fibrosis Foundation. Retrieved May 6, 2018.
- "Dorothy H. Andersen papers, 1930-1965". columbia.edu.
- "About the Cystic Fibrosis Foundation". Cystic Fibrosis Foundation. Retrieved 2013-02-19.
- Andrew Pollack (November 19, 2014), Deal by Cystic Fibrosis Foundation Raises Cash and Some Concern, New York Times, retrieved July 19, 2015
- Joseph Walker; Jonathan D. Rockoff (November 19, 2014), Cystic Fibrosis Foundation Sells Drug’s Rights for $3.3 Billion: The Biggest Royalty Purchase Ever Reflects Group’s Share of Kalydeco Sales, Wall Street Journal, retrieved July 19, 2015
- "Message from the President". Cystic Fibrosis Foundation. Retrieved 2013-02-13.
- Bethesda, Cystic Fibrosis Foundation 4550 Montgomery Ave Suite 1100 N.; Md 20814301-951-4422 800-344-4823. "Preston W. Campbell, MD, President and CEO to Retire; Michael P. Boyle, MD, Appointed as Successor". www.cff.org. Retrieved 2019-10-14.
- Bethesda, Cystic Fibrosis Foundation 4550 Montgomery Ave Suite 1100 N.; Md 20814301-951-4422 800-344-4823. "Compass Can Help". www.cff.org. Retrieved 2019-10-14.
- "Participate in an Event | CF Foundation". www.cff.org. Archived from the original on 2015-09-05. Retrieved 2016-09-19.
- Bethesda, Cystic Fibrosis Foundation 4550 Montgomery Ave Suite 1100 N.; Md 20814301-951-4422 800-344-4823. "Advocate | CF Foundation". www.cff.org. Retrieved 2019-10-14.
External links