The mission of the Cystic Fibrosis Foundation, as stated on its website, is “to cure cystic fibrosis 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.”

The CFF funds more research than any other organization, and nearly every CF drug available today was made possible because of Foundation support.  The approach of the CFF as a nonprofit organization was revolutionary in its time.  The founders recognized that CF, because of its status as an “orphan disease”--meaning not enough people have it to make funding research a profitable endeavor--wasn’t getting the funding necessary to find a cure, so they did something innovative:  They put money into a start-up drug development company in return for their focus on CF research.

The fundraising done by patients with CF and their friends and families is what keeps the CFF going.  Over $.90 of every dollar donated to the CFF goes directly into research.  The Foundation's drug development success has been recognized by Harvard Business School and by publications such as Forbes and The Wall Street Journal; it is considered one of the most efficient organizations of its kind; and it is an accredited charity of the Better Business Bureau's Wise Giving Alliance.  You look them up on Charity Navigator here.

Based in Bethesda, Md., the Foundation funds and accredits a national care center network that has been recognized by the National Institutes of Health as a model of care for a chronic disease.

Some of the Foundation’s achievements, according to its website

• When the Foundation was established in 1955, children with CF rarely lived long enough to attend elementary school. Due in large part to the Foundation's aggressive investments in innovative research and comprehensive care, many people with the disease are now living into their 30s, 40s and beyond.
• In 1989, CF Foundation-supported scientists discovered the defective gene that causes cystic fibrosis — a monumental breakthrough on the road to a cure.
• The Foundation played an integral role in the development and FDA approval of a number of therapies that are now part of regular treatment regimens for many with CF. The Foundation has a robust pipeline of promising potential drugs that target the disease from every angle.
• The Foundation helped support the development of the groundbreaking drug ivacaftor (Kalydeco™), the first to treat the underlying cause of CF in a small group of people with the disease. The Foundation also is supporting research to treat the root cause of the disease in more people living with CF. We will not rest until we find a cure for all people with CF.

Discover magazine published an extensive but easy to understand article chronicling the history of the disease, the Foundation, and its method of funding research.  Read it here.