Associations & Web Sites
[Website descriptions from the Library Journal,
American Parkinson Disease Association.
1250 Hylan Blvd., Staten Island, NY 10305-1946;
www.apdaparkinson.org. With 65 chapters and over 800 support groups nationwide, the APDA seeks to ease the burden and find the cure for PD. Its web site offers full-text booklets, video rentals, news releases, and reports on current research and political efforts.
Diet for Parkinsons Disease www.nutritionucanlivewith.com/index.html
Kathrynne Holden, Registered Dietician, has several extremely useful publications
for individuals, support groups, and nutrition professionals. "Kathrynne
Holden is the gold standard!"
Michael J. Fox Foundation for Parkinson's Research,
PO Box 4777, Grand Central Sta., New York, NY 10163; www.michaeljfox.org.
Founded by the actor in 2000, the foundation strives to assist in the cure of PD through an aggressively funded research agenda. It also provides information for patients and caregivers about the disease, disability benefits, research, and advocacy efforts. On the web site, the organization's newsletter is available in PDF format, and readers can access excerpts of Fox's book (above) in English and Spanish.
National Institute of Neurological Disorders and Stroke. PO Box 5801,
Bethesda, MD 20824; 800-352-9424; www.ninds.nih.gov.
The National Institute of Neurological Disorders, a part of the National Institutes of Health, conducts and supports basic and clinical research on the causes, prevention, diagnosis, and treatment of neurological disorders and stroke. It provides a great deal of free information on the more than 600 disorders, including PD. The web site includes a link to clinical trials seeking volunteers.
The National Parkinson Foundation. Bob Hope Parkinson Research Ctr.,
1501 NW 9th Ave., Bob Hope Rd., Miami, FL 33136-1494; 800-327-4545;
NPF offers a wealth of information, from the basics to a multimedia library and chat groups. Online full-text pamphlets are available in English and Spanish. Listings and contact information for PD Research Centers of Excellence are noted, and the quarterly Parkinson Report can be downloaded in PDF format.
Parkinson's Action Network. 300 N. Lee St., Alexandria, VA 22314;
800-850-4726; e-mail: firstname.lastname@example.org; www.parkinsonsaction.org.
Founded by a PD patient, the Parkinson's Action Network seeks to strengthen funding for PD research through grass-roots efforts, legislation, and promoting increased awareness of the disease. PAN's Advocacy Handbook can be downloaded from the web site, which also features a multimedia library.
Parkinsons Disease Foundation. (PDF). William Black Medical
Bldg., Columbia-Presbyterian Ctr., 710 W. 168th St., New York, NY 10032-9982;
800-457-6676; e-mail: email@example.com; www.pdf.org.
Users of the organizations web site can find support groups, clinical neurologists specializing in PD, an
Ask-the-Expert section to which they can submit questions, and a wide variety of other resources. They can also register to receive via e-mail select portions of the Parkinsons Disease Foundation's quarterly newsletter. [The merger between the PDF and the National Parkinson Foundation (NPF) is expected to be completed in early 2003; the new organization will be known as The Parkinson Foundation (TPF).Ed.]
The Parkinsons Institute. 1170 Morse Ave., Sunnyvale, CA 94089-1605;
Founded by neurologist J. William Langston in 1988 after his experience with heroin addicts who had developed PD after taking a designer drug (as he recounted in The Case of the Frozen Addicts, now out of print), the nonprofit organization conducts patient care as well as clinical and basic research. Other services include a Movement Disorders Clinic, a resource library, physical therapy, monthly seminars, and referrals to support groups and specialists. The semiannual newsletter is available online.
Young Onset Parkinsons Association
Younger Parkinsonians, whose needs and concerns differ from older patients, will find here personal narratives, a reading list, message board, and chat room.
*Website descriptions author information:
Janet M Schneider is Patient Education Librarian, James A. Haley Veterans' Hospital, Tampa, FL, and has reviewed health books for LJ for ten years. She is a Senior Member of the Academy of Health Information Professionals