Cystic Fibrosis Foundation
Cystic Fibrosis Foundation
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About this organization
Mission
The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with CF the opportunity to lead long, fulfilling lives by funding research and drug development, partnering with the CF community, and advancing high-quality, specialized care.
About
Medical programs - Since 1955, the Cystic Fibrosis Foundation has been dedicated to curing and controlling cystic fibrosis (CF). The Cystic Fibrosis Foundation is the world's leader in the search for a cure for cystic fibrosis, a life-threatening genetic disease that affects more than 30,000 people in the United States, and 70,000 worldwide. The foundation accomplishes its mission by funding life-saving research to discover and develop effective therapies for people with CF. The CF Foundation has funded hundreds of millions of dollars of research costs to help discover and develop CF drugs and therapies. Through the foundations efforts, the life expectancy of people with CF has more than doubled in the last 30 years, and research to find a cure is more promising than ever before. In 2018, the CF Foundation invested $189 million into research and care. The CF Foundation has attracted significant industry involvement in the fight against CF by funding contracted drug discovery and development research conducted by biotechnology companies. It also provides matching awards to CF drug developers for CF research and funds a specialized CF clinical trials network of nearly 90 foundation-accredited care centers. As a result of this funding, in 2018 the CF drug development pipeline had 26 therapies in development in addition to 10 FDA approved treatments that address complications like infections and a potential cure. The treatment and care protocols developed by the CF Foundation are helping tens of thousands of people with the disease live longer, healthier lives. To support its mission, the foundation funds and accredits a nationwide network of more than 130 care centers. The care center network provides the best care for people with CF and has been recognized by the National Institutes of Health as a model of care for a chronic disease. In 2018, the foundation provided more than $47 million of support for care centers and clinicians. The foundation's patient registry collects information on the health status of more than 30,700 people with CF, providing caregivers and researchers critical information to help identify new health trends and effective treatments and improve the quality of CF care. The patient registry is an internationally recognized model for other nonprofit health organizations, including CF advocacy groups.
Interesting data from their 2019 990 filing
The non-profit's mission, as described in the filing, is “The mission of the cystic fibrosis foundation is to cure cystic fibrosis (cf) and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment, and ensuring access to high quality specialized care. a life-shortening genetic disease, cf affects the lungs and digestive systems of more than 30,000 people in the u.s. currently, there is no cure.”.
When describing its duties, they were characterized as: “The mission is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives.”.
- The non-profit has complied with legal regulations by reporting their state of operation as DE.
- The filing shows that the non-profit's address as of 2019 is 4550 MONTGOMERY AVE STE 1100N, BETHESDA, MD, 20814.
- As of 2019, the non-profit has reported a total of 846 employees on their form.
- Does not operate a hospital.
- Does not operate a school.
- Does not collect art.
- Does not provide credit counseling.
- Has foreign activities.
- Is not a donor advised fund.
- Is not a private foundation.
- Expenses are greater than $1,000,000.
- Revenue is greater than $1,000,000.
- Revenue less expenses is -$62,121,812.
- The compensation of the CEO of the organization is subject to review and approval by an independent body.
- The organization has a written policy that describes how long it will retain documents.
- The organization has 15 independent voting members.
- The organization has a professional fund raiser.
- The organization was formed in 1955.
- The organization has a written policy that addresses conflicts of interest.
- The organization is required to file Schedule J.
- The organization is required to file Schedule O.
- The organization engages in lobbying activities.
- The organization pays $90,187,520 in salary, compensation, and benefits to its employees.
- The organization pays $26,896,581 in fundraising expenses.
- The organization provides Form 990 to its governing body.
- The organization pays grants to individuals.
- The organization has minutes of its meetings.
- The organization has a written whistleblower policy.
- The organization has fundraising events.
- The organization has grants to organizations.
- The organization's financial statements were reviewed by an accountant.
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