Research: Disability Specific Resources: Parkinson's Disease

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National

National Parkinson Foundation, Inc. works to educate patients, their caregivers and the general public as well as improve the quality of life for both patients and their caregivers. They offer a very informative website offering information on diagnosis and treatment, Parkinson facts and the latest on treatment research and clinical tests. The site also offers helpful resource links and a library of informative publications. To learn how the foundation can help you, visit their website, call (800) 327-4545 or e-mail mailbox@parkinson.org . The NPF has a page on the website where one can search for support groups in any state, within a radius of a zip code, National Parkinson's Foundation Support Groups. One can also search for Centers of Excellence on this page.

New Sign Parkinson Brain Donation Though it may seem morbid to think about, there can be no greater lasting gift to Parkinson's research than to donate your brain. "Studying the post-mortem brain provides scientists with the opportunity to better understand Parkinson's disease." This webpage on the Parkinson Disease Foundation website provides the viewer with several questions that should be asked prior to making the decision: "... Will all brain banks accept my donation? Are there any restrictions? ... Are there costs associated with brain donation?" It then goes on to list brain banks in several states in the USA, along with requirements, qualifications, and contact information.

Parkinson's Disease Foundation (PDF) is a leading national presence in Parkinson's disease research, patient education and public advocacy. "They are working for the nearly one million people in the Unite States living with Parkinson's by funding promising scientific research and supporting people with Parkinson's, their families and caregivers through educational programs and support services." This website is educational in scope by providing an overview of Parkinson's, offering a free newsletter, news and scientific information, research grants, and a list of FAQs from their Expert Resource Center. They also provide a list of publications and DVD's that are available to order, including exercise tapes, and booklets on Deep Brain Stimulation, advocacy, and other web resources. The site is easy to navigate, there is a lot of information here, though it is presented in a somewhat formal manner. Their main office is located at 1359 Broadway, Suite 1509, New York, NY 10018. Toll-free helpline: 800-457-6676. Main office phone: 212-923-4700. Main office fax: 212-923-4778.

Parkinson Alliance is a national non-profit organization founded in 1999 to foster philanthropic activities to raise funds for Parkinson's research. It is the "umbrella" under which the Parkinson's Unity Walk and Team Parkinson's operate. This site offers ways to donate, events that are upcoming, research that is undergoing, links to other Parkinson's sites. There is also a newsletter available to download, or to receive by mail for a suggested $25 donation. The Parkinson Alliance is in partnership with the Tuchman Foundation. Margaret Tuchman underwent Deep Brain Stimulation (DBS) surgery in 2000, and has since started a web-based "neighborhood" for others who have gone through the same experience. An allied website to The Parkinson Alliance is the Patient Centered Research. The Parkinson Alliance can be reached by mail at: PO Box 308, Kingston, NJ, 08528-0308 or by phone at: 1-800-579-8440 or 1-609-688-0870.

The Parkinson's Institute is a non-profit organization that uniquely combines a comprehensive Movement Disorders Patient Clinic, a full basic research laboratory, a cadre of world-renowned clinical researchers and epidemiologists, as well as specialized services, education and outreach programs...all under one roof. This is an excellent educational website. The links to basic and clinical research offer lots of information about the necessary research into the causes and cure for Parkinson's. Under the Patients & Caregivers link, the Outreach Program lists many services provided by the Institute, including free educational materials, referral to support groups, training seminars for healthcare professionals, an annual symposium, and tours of the Institute. The Parkinson's Institute can be reached by phone at 408.734.2800 (northern California) or toll-free at 1.800.655.2273. The Institute is located at 1170 Morse Avenue, Sunnyvale, California 94089-1605.

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