by Source: Health Watch
October 1, 1993
The CFIDS Association of America, Inc.
PO Box 220398, Charlotte, NC 28222-0398, 800/44-CFIDS, FAX 704/365-9755
Mission Statement:
To conquer CFIDS and related disorders and to inform and empower those affected by these disorders until a cure is found.
The CFIDS Association of America, Inc. is the nation's leading 501(c)(3) non-profit organization dedicated to conquering CFIDS (chronic fatigue and immune dysfunction syndrome, also known as chronic fatigue syndrome) by supporting research, education, and public policy programs. Since 1987, we have funded over $1.5 million in research and advocacy grants and have published and distributed over 300,000 copies of our journal, The CFIDS Chronicle. In addition, we have responded to over 200,000 inquiries, held more than 100 support group meetings, and sponsored or co-sponsored several major CFIDS research conferences. Through the advocacy activities that we fund, which include the only professional CFIDS lobbyist working in Washington, DC, we strive to make government and private institutions more responsive to the needs of persons with CFIDS (PWCs). Our efforts to raise research funds and publish information on this poorly understood disease have attracted the attention of international media (including interviews with CBS, NBC, CNN, The 700 Club, The Wall Street Journal, Newsweek magazine, USA Today, etc.)
In 1991, we implemented two national telephone services to provide the most rapid dissemination of information possible. Our Toll-Free Line, (800/442-3437), allows each caller to leave her/his name and address to request a CFIDS Information Packet about the disease and our association. Our Information Line, 900/ 896-CFID (900/896-2343), provides the caller with the opportunity to hear "cutting edge" information on CFIDS research, treatment, diagnosis, advocacy efforts, and other related topics.
Members of The CFIDS Association of America, Inc. receive a subscription to The CFIDS Chronicle, a membership packet, and special notice of major media, political or medical events of interest to the CFIDS community. We maintain, for members and others, a state-by-state listing of local CFIDS support groups, physicians familiar with the diagnosis CFIDS, attorneys familiar with CFIDS disability cases, and other PWC contacts. Given the scarcity of health care providers and others educated with regard to this disease, this network is often considered a "lifeline" for PWCs. We house a large inventory of educational materials and provide CFIDS Information Packets at no charge to all who inquire.
The association is governed by an all-volunteer board of directors comprised of PWCs and professionals. The board relies heavily on the voluntary services of the members of two expert advisory committees: the Scientific Advisory Committee and the Public Policy Advisory Committee. The members of these committees are among the most knowledgeable CFIDS clinicians, researchers, and advocates in the United States. They scrupulously abide by strict rules to avoid conflicts of interest and maintain confidentiality. Their dedicated work ensures that the programs selected for funding represent the most advanced, innovative, and deserving projects for which we receive applications and that this public benefit foundation is a good trustee of the financial contributions of its supporters.
A one-year membership in our association is $25. Contributions above this amount are fully tax-deductible. Supporting Members, who contribute $25 or more in addition to their annual dues, are acknowledged in the Chronicle and with a special gift. Donations earmarked specifically for either research or advocacy are used exclusively—dollar-for-dollar—for the specified purpose.
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