What is Cystic Fibrosis?
CF is a life-threatening, genetic disease that affects the lungs and digestive systems of tens of thousands of children in the United States. More than 10 million Americans are unknowing, symptom-less carriers of the defective CF gene. CF occurs in one of every 3,300 live births and about 1,000 new cases of CF are diagnosed each year.
There is currently no cure for cystic fibrosis.
When the CF Foundation began in 1955, few children lived to attend elementary school. Today, thanks to the efforts of scientists, caregivers and the development of new treatments supported by the CF Foundation, the median age of survival for a person with CF has increased to 37 years. A remarkable improvement...however, it is not good enough, as we continue to lose at least one life to CF every day.
The Cystic Fibrosis Foundation
The CFF is a donor-supported, nonprofit organization committed to finding therapies...and eventually a cure....for CF, and to improving the lives of those suffering from the disease. Since 1955, the CF Foundation has been dedicated to discovering and developing new therapies, as well as to finding and accrediting specialized care centers to treat people with the disease. The Foundation is consistently named one of the most efficient voluntary health organizations in the country, with only 8 cents of every dollar used for its administrative costs.
Our Current Funding Challenge
For the first time in the history of the Foundation, CF research opportunities are being presented at a pace that is exceeding the Foundation’s ability to fund them. As more clinical trials progress to Stage 3 testing, this shortfall could seriously impact the Foundation’s ability yto complete all trials, thus denying CF patients essential treatments and potentially, the cure for CF.
It is unacceptable to leave science on the table.
Why Support the CF Foundation?
The CF Foundation is Efficient. Forbes and SmartMoney have recognized the CF Foundation for its enterprising and efficient approach to curing a genetic disease. In 2005 over 90 cents of every dollar of revenue raised was available for investment in vital CF program services.
The CF Foundation is a Leader. The CF Foundation has taken a leadership role in the development of promising new drugs for CF. Because CF is considered an “orphan”
disease, most biotechnology and pharmaceutical companies are unlikely to commit resources to develop drugs for CF without the Foundation’s efforts to reduce risk .The CF Foundation has devised an innovative business model to ensure a commitment to drug development that is unrivaled by any other voluntary health organization.
The CF Foundation Leverages Investments to build a robust drug development pipeline. By fostering alliances with dozens of biotechnology and pharmaceutical companies through its nonprofit drug discovery and development affiliate, CF Foundation Therapeutics, Inc., the CF Foundation helps bridge the gap between the lab findings and drugs for the patient by supporting a pipeline of more than two dozen potential therapies.
The CF Foundation has a clear Vision. Because of its visionary focus, the CF Foundation has brought top notch scientists from many disciplines, medical institutions and corporations together under one virtual roof where it sets the scientific agenda and directs the likely paths to developing new and potentially life saving therapies.
The CF Foundation provides specialized patient care. By funding and accrediting a nationwide network of specialty care centers, the CF Foundation ensures that people with this complex disease have access to state-of-the-art care.
The CF Foundation has been praised by leaders at the National Institutes of Health.
The Foundation has been heralded as an excellent example of a group that works closely and successfully with medical researchers in the government, academic and private industries to develop drugs and to increase the quality of life and life expectancy of patients with CF.
The CF Foundation does not receive direct federal funding. The Foundation depends upon the generosity of individual donors, foundations and corporations to support its vital mission. In Iowa, despite the enormous cost of medications for CF patients, over 85% of the funds raised in the state are raised by families.
For more information on CF and the CFF please follow the following links: