Cystic Fibrosis FoundationCystic Fibrosis Foundation
The mission of the Cystic Fibrosis Foundation is to assure the development of the means to cure and control cystic fibrosis (CF) and to improve the quality of life for those with the disease. Read more
The mission of the Cystic Fibrosis Foundation is to assure the development of the means to cure and control cystic fibrosis (CF) and to improve the quality of life for those with the disease.
The Cystic Fibrosis Foundation has fueled dramatic improvements in research and care that have significantly changed the prognosis for people with CF.
In 1955, children born with CF often died before reaching elementary school. Today, the predicted median age of survival for people with CF is more than 37 years.
To quicken the pace of drug discovery and development, the Foundation has pioneered an innovative and highly effective business model using the same results-driven approach of a for-profit company. The Foundation has committed hundreds of millions of dollars in collaboration with the biotech industry to fuel the search for new treatments and a cure.
The Foundation's business model has been recognized by the National Institutes of Health and by publications such as Forbes, The New York Times, The Wall Street Journal and BusinessWeek.
The Foundation's unique approach to drug discovery has yielded a therapeutics pipeline with more than 30 potential therapies in development for CF.
Virtually every approved CF drug available today was made possible because of Foundation support. Since the 1980s, the Foundation has played an integral role in the development of Pulmozyme , TOBI , azithromycin and hypertonic saline, essential drugs for the treatment of CF.
For the first time in the history of the disease, CF clinical trial participants are taking oral drugs aimed at treating the basic defect in CF (a faulty protein). If successful, these drugs could add decades of life for people with the disease.
Currently, CF treatment costs are rising beyond many patients ability to pay. To address this growing problem, the Foundation recently established a nonprofit subsidiary. The new organization, the Cystic Fibrosis Patient Assistance Foundation (CFPAF), provides financial assistance to CF patients for select medications. The funds for patient assistance are provided by grants from pharmaceutical manufacturers.
The Foundation's Care Center Network consisting of approximately 115 care centers and 50 affiliate programs nationwide, ensures that people with CF receive the best care possible-no matter where they live. Our Quality Improvement Initiative was recently selected by the Alliance for Pediatric Quality as a model for excellence in care for a chronic disease.
Today, more than 45 percent of people with CF are age 18 or older. To meet the growing need for adult-specific care, the Foundation launched the Program for Adult Care Excellence (PACE), a multi-million dollar initiative to enhance CF care for adults and recruit new physicians to the field of CF.
The Foundation continues to be a strong and focused organization: 2008 was a banner year in terms of scientific and medical progress, and we are in a solid position to confront the current economic challenges. As we look ahead, we are working more proactively and thinking more creatively than ever before.
by Gisselle R. from Englewood, CO
(December 26, 2017)
I loved to participate because I learned what this disease really is. I also liked being able to help the organization and it was a great event. It was fun and also gave me the opportunity to meet well-known chefs.