A scene of people with various disabilities gathered around a blue lake, enjoying their home, community, the out-of-doors, health, recreation, housing, transportation and education with an accessible path for them to a high mountain and large yellow sun on the horizon.  New Horizons Un-Limited Inc.


Community and Internet Resources


Community: Support Groups and Disability Specific Organizations

Parkinson's Disease


National
State Listings: CA / CO / ME / MI / MN / NY / NC / OH / SC / TX / WA / / (Official USPS State Abbreviations)
Country Listings: Australia / United Kingdom

National

American Parkinson Disease Association is a national organization designed to serve patients, family, and caregivers with a wealth of information. This website provides a lot of information to patients, families, and caregivers. There are newsletters available to receive simply by filling in one’s email address. “Current events” lists activities to participate in around the country. “Publications” provides access to the annual report, the newsletters and many publications available to order by mail. Many of these are also available to download. The site also offers several related links to more information. The National Office address is 135 Parkinson Avenue, Staten Island, NY 10305. The phone number is 1-800-223- 2732 or 718-981-8001. The fax number is 1-718-981-4399. For more information, send email to: apda@apdaparkinson.org.

A unique program offered on this site is the Young Parkinson Center. Clicking this link takes one to the Arlette Johnson Young Parkinson Center. The information on these pages is geared toward the younger Parkinson patient and the information provided is helpful for the young patient who is still dealing with raising children, working, and other similar life challenges. Both of these sites are educational, informative, and easy to access.

Michael J Fox Foundation for Parkinson’s Research is a national website and educational in its scope. It is geared toward patients, as well as caregivers, families, and others who are interested in Parkinson’s research. The main focus of this website is the research that is funded by the Foundation. They are “dedicated to ensuring the development of a cure for Parkinson’s disease within this decade through an aggressively funded research agenda.” There are links to the research and grants funded by the Foundation, pages for donations and for other means of helping, such as fundraisers, estate gifts, and more. This is a research-based site, and not so much an educational, entertaining resource. However, in addition to the “how to help pages,” there are pages about Parkinson’s that will answer many questions that a patient or their caregiver might have. There are lists of events and also one may sign up for their free email newsletter. The address for the foundation is The Michael J Fox Foundation for Parkinson’s Research, Grand Central Station, P O Box 4777, New York, NY 10163. The phone number is 1-800-708-7644.

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.

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 DBS-STN.org. 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.

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. For more information, send email to: info@pdf.org.

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.

We Move is a site that offers worldwide education and awareness for movement disorders to healthcare professionals, patients, caregivers and families. Down the left side of the opening page are listed many types of movement disorders, including Parkinson’s, Huntington’s, Tourette’s, Restless Legs Syndrome, Dystonia, and Essential Tremor. Each of these links leads to a page where there is an overview of the disease, as well as information about the causes, diagnosis, and treatment. In addition to the links about individual illnesses, there are links to chat rooms, discussion forums, events and activities to participate in, and a sign up for their free newsletter. There is also a link to the International Guide to Movement Disorder Patient Advocacy Groups and Foundations. This is a listing of organizations around the world dedicated to providing care and support to patients and families. There is a link that takes one to the MD Virtual University. This page is designed for the healthcare professional. There are classes, a resource library, meetings and events, and peer-to-peer pages. We Move is an easy site to navigate, there is a huge amount of information available, and it is one of the best resources around. We Move is located at 204 West 84th St., New York, NY 10024. For more information, send email to: wemove@wemove.org.


State Listings


California

Central Valley Parkinson's Support Group's (CVPSG) mission is to inform and support those in our community who have Parkinson's Disease and provide information to the family, friends and caregivers of those with Parkinson's Disease. In as much as CVPSG is able, we will raise funds for research into the cause and cure of Parkinson's Disease. The CVPSG will network with other Parkinson's Support Groups and with the National Parkinson's organizations." The group has been in existence since 1994, meeting the first Friday of the month. They are currently working on providing information to nursing homes and other professional organizations, and also raising funds for the annual Parkinson's Unity Walk. For more information, contact the CVPSG at 5417 West LaVida Court, Visalia, CA 93277, by phone: (559)622-9044 or by e-mail: info@cvpsg.org

Greater Fresno Parkinson's Support Group (GFPSG) was founded over 20 years ago. Meetings are held the 2nd Saturday of each month. The purpose of the group is to educate patients about resources, obtain accurate information, and to provide comfort and encouragement to each other. There is a long list of links on the site, and a page of newsletters available. The GFPSG can be reached by e-mail: info@gfpsg.org, by phone: 559-298-4080 or 559-226-2673 or by mail: 5110 N. Fruit Avenue #122, Fresno, CA 93711-3060.


Colorado

Parkinson Association of the Rockies (PAR) mission is to provide direct services to the patient and family (adaptive aids, emotional support, respite care); to provide education and awareness of the special needs of Parkinsonians to the community and health care workers (in-services, seminars, symposiums) to ensure a better quality of life for the patient and the family." This website offers a free newsletter, links to free literature, and free screening tools. (DO NOT substitute any information gained from these tools for valuable information from your doctor.) There are also other benefits such as in-home assessments by a social worker, a durable medical equipment exchange program, and a lending library. PAR can be reached by e-mail: info@parkinsonrockies.org ; by mail: 1325 S. Colorado Blvd. #204-B, Denver, CO 80222; by phone: (303) 830-1839, toll-free: (866) 718-2996, or FAX: (303) 830-2577.

Maine

New Sign
The Maine Chapter of the American Parkinson Disease Association (MEAPDA) seeks "to educate those interested in learning more about Parkinson's disease, to assist support groups throughout the state, to help develop programs to meet the needs of Parkinson's patients and their caregivers and to raise funds to find a cure." Though the MEAPDA is not a support group itself, the web site lists several Parkinson's support groups throughout the state of Maine, including groups in Augusta, Bangor, Brunswick, Camden, Falmouth, and Portland. Each listing provides info about when and where the group meets, and contact information. The MEAPDA website also provides info about what Parkinson's is, how it is diagnosed and treated, events to participate in, and a links page. The MEAPDA can be reached by mail at PO Box 1730, Portland, ME 04104; by phone at (207) 781-1738; or by fax at (207) 878-2511.


Michigan

Michigan Parkinson Foundation was founded in 1983. The website is loaded with information aimed at Parkinson's patients and caregivers in Michigan, as well as nationwide. There are Parkinson's facts, and a newsletter available online or by mail. There is a map showing local support groups. A calendar of events, a list of programs supported by MPF, links to advocacy and other Parkinson's sites, and information about research are all segments of this site. Michigan Parkinson Foundation can be reached by mail at: 30400 Telegraph Road, Suite 150, Bingham Farms, MI 48025, by phone: (248) 433-1011, (800) 852-9781; or by e-mail: mpfdir@yahoo.com


Minnesota

Parkinson Association of Minnesota (PAM) is a nonprofit, voluntary alliance, dedicated to improving the lives of those affected by Parkinson's disease, through fundraising, community building, advocacy, and increasing public awareness. It is a chapter affiliate of the National Parkinson Foundation (NPF), which sponsors research and treatment centers around the world. Membership is open to anyone wishing to promote Parkinson's disease awareness. For more information send mail to the Parkinson Association of Minnesota, 3407 Kilmer Lane, Plymouth, Minnesota 55441, phone: (763) 545-1272 or send e-mail to: info@parkinsonmn.org .


New York

New Sign
Parkinson Support Group of Upstate New York (PSGUNY) has a three-fold mission to support and assist those with Parkinson's disease, their families, care givers and care partners in adapting more positively to the physical, emotional and social changes associated with Parkinson's disease." They strive to support people with Parkinson's and their families, to educate the community about Parkinson's, and to find a cure by supporting research. They offer several different support group meetings to accomodate varying schedules, including the 1st Monday afternoon, the 1st Tuesday evening, and the 3rd Saturday lunch group. The group also offers "Stretching the Limits" exercise classes. Many events are sponsored by PSGUNY, including the Canal 5K Run & Walk, the annual Family Health Fair, and the annual Support Group Picnic. The support group can be reached by email at info@psguny.org by telephone at (585) 234-5355, or by mail at PO Box 23204, Rochester, NY 14692.


North Carolina

Parkinson Association of the Carolinas "is an education, advocacy, referral and support organization for Parkinson's Disease." This is an excellent source of information with Questions & Answers and a glossary of Parkinson's terms. There are also newsletters available, lists of advocacy groups, and upcoming events in the Carolinas. Their programs include support groups, respite care, and an equipment lending library. The site is easy to navigate and presents information for patients, families, friends, physicians and caregivers. For more information contact: Parkinson Association of the Carolina, 601 East Fifth Street, Suite 140, Charlotte, NC 28202, Phone: 704-248-3722 Fax: 704-943-3748, Toll-Free: 1-866-903-7275 or send e-mail to info@parkinsonassociation.org


Ohio

New Sign
Central Ohio Parkinson Society [COPS] "is a nonprofit organization dedicated to providing support to individuals and families affected by Parkinson's disease through support groups, education, awareness, and the support of research." COPS was founded in 1980, and provides support for a network of support groups in 33 counties in central and southeast Ohio. The web site offers links to education, communication - in the form of a monthly newsletter, classes such as tai chi and speech therapy, upcoming events, and volunteer opportunities. COPS can be reached by mail: PO Box 16126, Columbus, OH 43216-6126; by phone: (614) 486-1901 or toll-free (866) 920-6673; by fax: (614) 486-3706; by email: centralohioparkinson.org


South Carolina

Columbia Parkinson's Support Group has been serving the Mid-Lands of South Carolina since 1985. The group is recognized as a Lexington Medical Center Support Group, and is also an affiliate member of the Parkinson Association of the Carolinas. Meetings are held the 3rd Sunday of the month and are open to anyone. They can be reached by phone: 803-604-0061 or by email: lakeside@att.net


Texas

Dallas Area Parkinsonism Society DAPS was founded in 1978 with the focus of providing and encouraging support groups in the region. The site is primarily aimed at being a support for Parkinson's patients and caregivers. They can be reached by mail at: 3003 LBJ Freeway Suite 125E, Dallas, TX 75234, or by phone at: 972-620-7600.or by email: daps125@sbcglobal.net

Houston Area Parkinson Society (HAPS) was founded in 1974, and serves and advocates for those affected by Parkinson's in the Houston metro area. The site is primarily a support system for Parkinson's patients and caregivers. Services offered include: respite care, emergency financial aid, transportation services, social services, and a monthly newsletter. They also offer free therapy groups: physical, occupational, speech, water and Tai Chi. HAPS can be reached by phone at: 713-626-7114, or by mail at: 2700 Southwest Freeway, Suite 284, Houston, TX 77098.


Washington

Northwest Parkinson's Foundation strives to establish optimal quality of life for the Northwest Parkinson's community through awareness, education, advocacy, and care." This website is one of the best available for patients and caregivers. From a glossary of terms and learning about Parkinson's to a free online training course for caregivers and "Porridge for Parkinson's" parties, this site has it all. There is a bi-monthly newsletter, lots of links, Team Parkinson's (a group of bicyclists), and the Telehealth Network. Though the primary focus of this website is Parkinson's patients in the Northwest, there is a wealth of information for patients and caregivers across the country. The Northwest Parkinson's Foundation may be contacted by phone (1-877-980-7500), or by mail P.O. Box 56, Mercer Island, WA 98040 or by e-mail nwpf@nwpf.org


Country Listings


Australia

Parkinson's Australia has a few offerings of newsletters, events, and support groups, but its offerings of "About Parkinson's, Therapeutic Exercises," and "Advice for Daily Living" (which includes strategies, driving, and communication)are good. The "Links" section lists Australian and international websites, general information, drugs, and treatment options.


United Kingdom

Parkinson’s Disease Society was established in 1969 and is “the leading UK charity fighting Parkinson’s on all fronts.” Their website offers a great deal of information to the patient, caregiver, and professional. “About Parkinson’s” has links to what Parkinson’s is, how to live with the illness, and many treatment options available, from drugs to surgery. The “Advice” section offers help with employment questions, benefits, questions young patients may ask, and guidance for caregivers. There is a listing of support groups and local branches of the PDS, and opportunities for volunteers. For professionals, there are links to training, conferences, and support and resources. There are lots of free information sheets available to order or to download as PDF documents; one can also register with the site to access the forum, where questions are asked and answered. This website is easy to navigate, very educational, and very helpful and informative. Although there is no email address listed, there is a Helpline: 0 808 800 0303.


For more on the topic of Parkinson's Disease:
If you have questions or ideas, information and solutions that you would like to share with us, you may contact us by e-mail at: horizons@new-horizons.org or to use our NHU E-Mail Form or NHU Community Discussion Board, click on the links below.

Homepage icon Home  / Disability News  / NHU Quarterly Newsletter
Share Your Knowledge!  / NHU Community Forum  / Contact Us
About NHU  / Announcements and Features  / Contribute  /  What's New?  /  Site Plan


© Copyright 2004, 2006-2010 New Horizons Un-Limited Inc.
[Originated February 27, 2004, Updated April 22, 2014]
NHU has no liability for content or goods on the Internet.