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PARKINSON'S & MEDICAL ORGANIZATIONS


Do you have any recommendations for our "Organizations" list?
Please Contact Us and give us your recommendations, and we may include them on our list.

Please note that many of these organizations have free newsletters and publications available for you to sign-up to receive either by paper mail or email.


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Duncan will help you find what you are looking for.
Photo by Dennis Baker

INDEX
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The American Academy of Neurology Foundation provides a resource web site called The Brain Matters. This site will help you better understand common disorders of the brain, as well as learn about people living with the disorders. The information was prepared by neurologists-doctors with specialized training in diagnosing, treating, and managing disorders of the brain and nervous system. Click here for information about Parkinson's Disease
AARP - While the AARP organization is not a Parkinson specific group, it is included here because it offers a wealth of authoritative information and resources on many issues, problems, and areas of interest affecting the 50+ population. AARP is a membership organization dedicated to enhancing the experience of aging through advocacy, information, and services.

AARP has a great deal of information on their web site available to you without becoming a member of AARP - for example: there tools for healthy living, financial planning, consumer protection, safe driving, and caring for parents. There are also many individual benefits for joining the organization - access to health insurance, automobile insurance, homeowners insurance, and other services from AARP. They have great discounts on travel and cruises, Internet access, online shopping, and much more. You do need to be 50+ years old to join AARP. To join Click Here.

Read the latest South Carolina AARP news here.
American Parkinson Disease Association, Inc. - The Georgia Chapter and The Information & Referral Center at Emory University. The American Parkinson Disease Association, Inc. was founded in 1961 to ease the burden and find a cure for Parkinson's disease. Headquartered in New York, the organization focuses its energies on research, patient support, education and raising public awareness of the disease.
ADPA's National "Young Onset Center" - The nation's only full-time, free-standing, information and resource center specifically designed to meet the needs of the young people with Parkinson's disease.
American Parkinson Disease Association apdaparkinson.org 1-800-223-2732
American Pain Foundation painfoundation.org 1-888-615-PAIN (7246)
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Family Caregivers - Established in 2001 as a program of Family Caregiver Alliance, the National Center on Caregiving (NCC) works to advance the development of high-quality, cost-effective policies and programs for caregivers in every state in the country. Uniting research, public policy and services, the NCC serves as a central source of information on caregiving and long-term care issues for policy makers, service providers, media, funders and family caregivers throughout the country. Caregiving is the backbone of the American long-term care system: the value of the services provided by informal caregivers (family or friends of seriously ill loved ones) is estimated at $306 billion annually.

See also South Carolina Caregiver Resources
The Duke University Movement Disorders Center is a comprehensive clinical program offering evaluation and treatment of movement disorders, including Parkinson's disease, generalized and focal dystonia, tremor, tardive dyskinesia, tic disorders, restless leg syndrome, chorea, and myoclonus.  Patients with these conditions may be seen in the Duke Movement Disorders Clinic at 932 Morreene Road, or in the Movement Disorders Clinic at the Durham VA Hospital, Durham North Carolina..
Emory Movement Disorders Center - The Emory Movement Disorders Center is a leading treatment and research center for the spectrum of movement disorders, including Parkinson's Disease, dystonia, essential tremor, Huntington's Disease, and Tourette's syndrome. Providing comprehensive services ranging from diagnosis to rehabilitation, our neurosurgeons, neurologists, psychologists and researchers work together to tailor treatment for the specific needs of each patient. The Emory Movement Disorders Center is part of the Emory School of Medicine, globally recognized for medical research and physician training, and Emory Healthcare, one of the nation's leading health care systems. The resources of both institutions enable our physicians and staff to employ the latest innovations for comprehensive treatment of these often debilitating disorders.

Click Here to view Emory trials available on the National Institute of Health, www.clinicaltrials.gov Web site.
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The Foundation for PSP, CBD, and Related Brain Diseases Phone 1-800-457-4777
HealingWell.com - Parkinson's Disease Resource Center - This web site also has community, information, and resources on many different types of diseases, disorders, and chronic illnesses. You'll find information, resources, and support, plus full access to the forums and chat rooms. And it's all free!
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International Essential Tremor Foundation
Lewy Body Dementia Association
Lexington Medical Center - Located in one of South Carolina's fastest growing communities, Lexington Medical Center (LMC) is a 346-bed metropolitan medical complex that anchors a comprehensive, county-wide health care network. LMC also sponsors and provides assistance for Columbia area community support groups. The Columbia Parkinson's Support Group appreciates that LMC provides our group with excellent meeting facilities.
Medical College of Georgia - In 1828 the Medical Academy of Georgia was chartered by the state of Georgia. The Medical College of Georgia is accredited by the Commission on Colleges of the Southern Association of Colleges and Schools to award one-year and advanced certificates and degrees at the baccalaureate, master's, first professional, and doctoral levels.

The MCG Health Neuroscience Center's programs and services are second to none serving patients with difficult-to-treat brain, spine and nerve disorders such as epilepsy, acute stroke, Parkinson's disease, neuro-oncology, neuromuscular disease, pediatric neurological problems and other rare disorders. MCGHealth is home to the Southeast Gamma Knife Center offering brain surgery with no incision.
The MCGHealth Neuroscience Center's Movement Disorders Clinic and the Department of Neurology - Parkinson's Disease Program, led by Dr. Kapil Sethi, has been designated a Center of Excellence by the National Parkinson's Foundation Inc., the largest international organization supporting scientific and clinical initiatives for patients with Parkinson's disease and their families. MCGHealth is the only facility in Georgia and South Carolina to obtain this designation for its clinical and basic science research as well as for its physical, speech and occupational therapy programs for patients with this neurodegenerative disease. "This designation carries recognition that the MCGHealth Movement Disorders Clinic is as good as anyone else in the country," said Dr. Sethi.

The MCGHealth Neurosciences Center provides the latest medical and surgical treatment, including pallidotomy and deep brain stimulation for Parkinson's disease. MCGHealth is also involved in many clinical studies to find better treatments including several new drugs that slow disease progression. Basic science research is under way that involves exploring the mechanisms of cell death, including environmental toxins that may play a role in the destruction of brain cells that occur with the disease. Research studies are also under way evaluating the use of stem cells to reverse the disease process. Click here to view current research studies and clinical trials at the MCG Neuroscience Center and at the Department of Neurology

For a complete list of all MCG clinical trials please Click Here.
Medical University of South Carolina - The Medical University of South Carolina has served the citizens of South Carolina since 1824. It has expanded from a small private college for the training of physicians to a state university with a medical center and six colleges for the education of a broad range of health professionals, biomedical scientists and other health related personnel.

Since its beginning in 2001, the Movement Disorders Program has grown exponentially in its endeavors at the Medical University of South Carolina (MUSC). The Movement Disorders Program has become the hub for collaborations with investigators from many departments and centers at MUSC. The Movement Disorders Program offers comprehensive diagnostic and treatment services for individuals suffering from disorders of motion and/or disease of the motor system. The Movement Disorders Program participates in an array of clinical trials, which changes periodically. 
“MDVU - The Movement Disorder Virtual University is the healthcare professional's source for movement disorder news, resources and educational activities. MDVU is brought to you by WE MOVE, a not-for-profit organization that has been educating and informing the movement disorder community for over a decade. WE MOVE believes that increased knowledge and understanding promote timely, accurate diagnosis and up-to-date treatment, resulting in a better quality of life for individuals affected by movement disorders.” 
Michael J. Fox Foundation for Parkinson's Research - This national foundation provides excellent Parkinson information and news, as well as up-to-date research information. Sign up for the free MJFF online community and receive monthly FoxFlash updates on PD research, news, and events to be sent to your email address. Michael J. Fox has PD. He started this group to teach patients and caregivers about living with PD.
Muhammad Ali Parkinson Center - The Muhammad Ali Parkinson Center (MAPC) is a National Parkinson Foundation Center of Excellence, and a wonderful resource for people with Parkinson’s and their families. MAPC is committed to providing excellence in treatment, research, and education for patients and families affected by Parkinson’s disease and other movement disorders regardless of ability to pay.
National Alliance for Caregiving (NAC) - This group supports caregivers and the health care workers who help them. They also teach the public about issues facing caregivers today.
National Family Caregivers Association - The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 50 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being.
National Institutes of Health - This site contains a search engine that allows you to access information about NIH research on Parkinson's Disease and other topics of interest.

To view a list of NIH studies currently seeking patients Click Here
For more information about Parkinson's Disease research Click Here
National Parkinson Foundation - NPF is the largest and oldest national Parkinson foundation in the United States. NPF supports Parkinson-related research, patient care, education, training, and outreach. NPF can teach you about PD and tell you about new research, events, and support groups. This group also provides caregivers of PD patients with helpful tips and real-life stories. NPF provides several excellent publications - some are free.
Northwest Parkinson's Foundation - The Northwest Parkinson's Foundation is a nonprofit organization established to improve quality of life for the Northwest Parkinson's disease community. Achieving their mission through programs of awareness, education, advocacy and care. Sign up to receive their free bi-monthly newsletter, the "Parkinson's Post".
The Neurological Institute's, located in Charlotte, NC, main objective is to help families maintain a well balanced lifestyle. They have an experienced staff of neurologists, physician assistants/nurse practitioners, research coordinators, technicians, therapists and clinical staff. Their physicians evaluate patients using the latest in technological and medical information to obtain an accurate diagnosis.

The Neurological Institute has a large Clinical Research division that is currently participating in some of the most cutting edge research dealing with
  • Alzheimer’s
  • Parkinson’s Disease
  • Multiple Sclerosis
  • Restless Leg Syndrome (RLS)
  • Sleep Disorders
The Parkinson's Action Network (PAN) is the unified political voice of the Parkinson’s disease community — advocating for more than one million Americans and their families. Today PAN serves as the voice of Parkinson’s on numerous public policy issues affecting the Parkinson’s community. In addition to continuing our work on NIH funding and research, the Parkinson’s community is now a powerful voice on many crucial issues including Parkinson’s-specific programs at the Departments of Defense and Veteran’s Affairs, FDA drug approval issues, HHS programs (Medicare and Social Security), and our continuing struggle to achieve research freedom for stem cell research.

For more information about Parkinson's disease Click Here
For a list of interesting links related to Parkinson's disease Click Here
Parkinson's Association of the Carolinas - The Parkinson Association of the both North and South Carolina, is an education, advocacy, referral and support organization for Parkinson's Disease. Our services target those who have Parkinson's Disease as well as their families, friends, physicians, caregivers as well as the general public. PAC is the affiliate organization for the Columbia Parkinson's Support Group.
The Parkinson Alliance - The Princeton, NJ-based Parkinson Alliance is a national non-profit organization dedicated to raising funds to help finance the most promising research to find the cause and cure for Parkinson's disease. The Parkinson Alliance is also the umbrella organization responsible for the

Parkinson’s Unity Walk
- The Parkinson's Unity Walk is the largest grassroots fundraiser for Parkinson's research in the community. Since 1994, families, friends, caregivers, and major Parkinson's foundations have gathered once a year to unify the common goal of finding a cure for Parkinson's disease.
Parkinson's Disease Foundation (PDF) - This group teaches patients and the public about PD. They help search for a cure. They also find ways to make living with PD easier. This Web site has news about PD and an "Ask the Expert" feature. They offer several publications. One unique free excellent resource that they offer is their free PD symposium webcasts - for those of you who can't always travel to PD symposiums throughout the country, you can watch the webcasts at home for free.
Parkinson's Disease Registry- A Long-Term Study
The purpose of the Parkinson's disease registry is to develop a national database for persons with Parkinson's disease. It will be used to facilitate the development of new therapies and healthcare services in order to improve the quality of life for people with PD. The registry will also be a means for investigators in the field of PD to quickly identify and notify people about research studies for which they are eligible. Any individual who has been diagnosed with PD is eligible to enroll. To participate in the registry.
ParkinsonsHealth.com - Tips and tools for living with PD, information on symptoms and treatments, and animated illustrations related to PD. Also offers registration for a free subscription to "Life In Balance - a Newsletter for People and Families Living with PD". Provides useful information for caregivers about PD and being a caregiver.
The Parkinson's Institute and Clinical Center
Parkinson's Living - Your Source for Living Well with PD. This web site is provided by Boehringer Ingelheim Pharmaceuticals, Inc. The web site has useful Educational Tools, which you can take to your doctor. Use the treatment diary and other Treatment Tools to help you stay on top of Parkinson's. Learn more About Parkinson's Disease, a complex condition with Symptoms that may change as the disease progresses. You'll also find information about the Stages of Parkinson's Disease. Please visit the Caregiver Resources section to explore the many options available to assist you with the daily challenges of caring for someone with Parkinson's disease. Find information specifically for Caregivers.
PDtrials - Find up-to-date information on Parkinson’s disease trials currently enrolling participants in the U.S. and Canada. PDtrials is a collaborative initiative of Parkinson’s organizations dedicated to increasing education and awareness about clinical research. Central to this effort is providing information to help people with Parkinson’s learn more and make informed decisions about participating in clinical studies. On this web site you can - View all posted clinical trials - Locate a clinical trial in your area - Browse by clinical trial objectives - Browse trials by Parkinson's symptoms - Search by keyword to help find a trialThis web site has excellent information on Clinical Trials. You can also sign-up to receive email about the latest clinical trials and results of clinical trials.
Progressive Supranuclear Palsy (PSP) is a little-known  degenerative brain disease that is often misdiagnosed as Alzheimer’s or Parkinson’s disease. The CurePSP web site has information about the PSP disease.
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Tremor Action Network
WE MOVE Worldwide Education and Awareness for Movement Disorders - A comprehensive resource for movement disorder information containing the latest information on treatment, conferences, educational materials, and support groups. Parkinson specific information can be found at this link.
WebMed was featured on CNN as having the best medical sites on the web. While WebMed is designed for educational purposes only and not engaged in rendering medical advice, there is a lot of medical information available; and it is useful as an academic, professional, and consumer medical resource. There are many ways to search for medical information on this web site, so try the various links available. For starters try the Medical Search Engine and enter "parkinson" in the search box.

 
 
 
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