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BUSINESS DIRECTORY

Cystic Fibrosis Foundation

contact:
address: 3443 NW 55th St # 7

city: Fort Lauderdale state: FL zip: 33309
phone: (954) 739-5006url: CFF.org

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The Cystic Fibrosis Foundation:

• Promotes high-quality, state-of-the-art, specialized care for individuals with CF by supporting and accrediting more than 115 care centers nationwide. These centers, located at major teaching and community hospitals throughout the United States, offer diagnostic services and comprehensive treatment for people with CF and provide support for their families.

• Advances CF research by providing grants to scientists to conduct CF research throughout the world. Grants include new investigator and clinical research, research and clinical fellowships, and student traineeships, among others.

• Supports the advancement of CF laboratory science by funding its own Research Development Program network of 10 research centers at leading universities and medical schools throughout the United States. By applying cutting-edge scientific techniques to targeted research opportunities, these centers are discovering new facts about the disease that lead to new therapies. The CF Foundation was the first voluntary health agency to create and fund such a network.

• Supports and governs the many stages of drug development and clinical evaluation of CF therapies through its non-profit drug discovery and development affiliate, Cystic Fibrosis Foundation Therapeutics (CFFT). Total funding of CFFT is provided by the CF Foundation.

• Offers matching “awards” to biotechnology companies to encourage them to become partners in the development of new CF drug treatments.

• Carries out an innovative Therapeutics Development Program (TDP), through CFFT, which supports the full spectrum of CF drug development -- from the discovery of a promising drug to clinical evaluation in patients. The dynamic program incorporates the latest in drug discovery technology and brings these potential drugs to the laboratory for further study. If successful, they are then evaluated in people with CF through clinical trials at the CF Foundation's centralized network of 18 centers that comprise the Therapeutics Development Network. The scope of this project is unrivaled by any other voluntary health organization.

• Funds many clinical trials, including those to correct the basic defect in CF cells, fight respiratory infection, thin the CF mucus, reduce inflammation, and enhance digestion/absorption of food and nutrients, among others.

• Supports a centralized laboratory to provide accurate and rapid identification of the lethal Burkholderia cepacia complex bacterium. Proper identification of B. cepacia complex in an individual's lungs decreases the time it takes for a physician to prescribe the best drug therapy.

• Initiates and conducts two annual medical conferences to promote innovation and discourse on the latest knowledge about the disease: 1) the Williamsburg Conference invites researchers to focus on basic CF science and drug discovery efforts; and 2) the North American CF Conference focuses on the latest advances in CF research and care and includes thousands of scientists and medical care professionals. Both meetings generate new ideas for future research strategies.

• Conducts GREAT STRIDES, the CF Foundation’s largest national fund-raiser, at more than 500 walk sites nationwide. GREAT STRIDES, held primarily during the month of May, raises millions of dollars for CF research and care programs each year. The CF Foundation also recognizes the month of May as National Cystic Fibrosis Awareness Month, to place a national spotlight on CF and the importance of supporting CF research and medical programs.

• Supports its research and medical programs with the help of more than 300,000 volunteers. These volunteers are part of fund-raising efforts at 80 chapters and branch offices across the country.

• Maintains a Web site, www.cff.org, which provides information on: the diagnosis of CF; living with CF; updates on CF research and clinical trials; legislative action issues; and fund-raising events and volunteer opportunities. The CF Foundation also provides a quarterly newsletter and educational brochures, fact sheets, videos and Web casts, free of charge.

• Remains one of the top voluntary health organizations in the country at efficiently using funds raised to invest in vital medical and research programs. Smart Money magazine has cited the CF Foundation as a charity that “won't waste your money.” Forbes, Science and USA Today have all recognized the CF Foundation for the scope and depth of the TDP and for its active role in working with the biopharmaceutical industry.

• Advocates for increased funding for the National Institutes of Health and testifies before the U.S. Congress to encourage more federal investment in basic science research. The CF Foundation works closely with the U.S. Congress, the Food and Drug Administration and pharmaceutical companies to speed the development of drugs to treat CF, while encouraging state governments to improve medical coverage programs.

• Works in partnership with the Cystic Fibrosis Services Pharmacy, Inc., a wholly owned subsidiary, to provide people with cystic fibrosis access to CF-specific medications. CF Services also provides personalized service, patient advocacy, patient education, and reimbursement support. Adding Tomorrows Every Day Since the defective CF gene and its protein product were discovered in 1989, the pace of CF research has greatly accelerated. Scientists are now addressing the root cause of CF through a variety of technologies including gene therapy. To bring these life-saving research programs to fruition, the CF Foundation depends on the support of individuals, families and corporate sponsors alike. The generosity of these donors has already enabled scientists to identify the gene that causes CF, to develop new treatments for CF, to correct defective CF cells in laboratory dishes and much more (see Progress in CF Research fact sheet). The CF Foundation’s “pipeline” includes more than 25 promising CF therapy candidates in clinical trials and six others in laboratory development. Any one of them, or a combination, could have a profound impact on the lives of people with CF. In short, the potential of promising new drug therapies and the range of new drug discovery technologies being applied to CF, with support from the CF Foundation and its volunteers and contributors, are painting a bright future with the likelihood of significant, and even life-saving, new treatments for people with CF.




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