Parkinson Foundation of the National Capital Area (PFNCA)
Maryland Association of Parkinson’s Support (MAPS)
Parkinson’s Disease Research, Education and Clinical Centers (PADRECC) in Richmond, Virginia
Melvin Weinstein Parkinson’s Foundation
Many people with Parkinson’s require constant care, specialized equipment and services to effectively manage their disease. With limited insurance coverage, a substantial portion of required expenses are left to be paid out of pocket. For many individuals, it is nearly impossible to keep up with the costs. The Melvin Weinstein Parkinson’s Foundation purchases equipment and supplies necessary for Parkinson’s patients to sustain a safe and healthy environment and preserve their self-esteem and dignity.
American Parkinson Disease Association
“APDA is the largest grassroots network dedicated to fighting Parkinson’s disease (PD) and works tirelessly to assist the more than 1 million Americans with PD live life to the fullest in the face of this chronic, neurological disorder. Headquartered in New York, the organization focuses its energies on research, patient support, education and raising public awareness of the disease.”
See also the Hampton Roads chapter in Virginia.
Check out their Education & Support page for lots of information available through their publications, webinars, forums, and much more!
*Update 8.5.18* From Susan Dietrich, Coordinator, APDA Information & Referral Center of Virginia
“I’d like to especially direct you to the blog by Dr. Rebecca Gilbert, APDA Vice President and Chief Scientific Officer (just click on the Blog tab). She impressed me at the meeting with her knowledge, and with her easy to understand way of communicating that knowledge. In the blog, she discusses all the “hot topics” that we are hearing with regards to Parkinson’s. I hope that you will take a look at the website, which has a lot of good information – but definitely read through Dr. Gilbert’s blog.”
Davis Phinney Foundation for Parkinson’s
“Our mission is to help people with Parkinson’s to live well today. To support that mission we offer specific programs, information and tools for living well.” Click here for information about their Victory Summit Symposia.
*Update 6.21.18* The latest edition of Every Victory counts: Essential Information and Inspiration for a Lifetime of Wellness with Parkinson’s Disease by Monique Giroux, MD & Sierra Farris, PA-C, MPAS, and 40 leading Parkinson’s specialist contributors is now available. It’s free, but donations to support the manual are always appreciated. Click here to learn more.
Michael J. Fox Foundation for Parkinson’s Research (MJFF)
“Our single, urgent goal: Eliminate Parkinson’s disease in our lifetime.”
While the primary focus of this foundation is research, this website also features lots of good information on Living with Parkinson’s.
In 2016, the National Parkinson’s Foundation and the Parkinson’s Disease Foundation merged to form the Parkinson’s Foundation. Parkinson’s Foundation has a large collection of publications available for free and you’ll find a list of them here.
Lots of great resource material and forums: Ask the Doctor, Ask the Nutritionist, and Talk to a Speech Clinician.
Helpline 1.800.4PD.INFO (1-800-473-4636)
Their Aware in Care kit will help you plan for a hospital visit and avoid complications. It’s all free!
Parkinson Voice Project
For more than 15 years, Parkinson Voice Project has specialized in restoring the voices of those with Parkinson’s disease. We treat patients in our clinic, conduct research, and train speech-language pathologists in our unique therapy programs.
SPEAK OUT!® is a highly effective speech therapy program developed by Parkinson Voice Project.
SPEAK OUT!® is the first step in Parkinson Voice Project’s two-part therapy approach. The primary goals of SPEAK OUT!® are to strengthen the muscles used for speaking and swallowing and to teach patients how to speak with intent. Once patients complete SPEAK OUT!®, they transition to the second part of Parkinson Voice Project’s program called The LOUD Crowd®.
Parkinson Voice Project treats individuals with Parkinson’s and Parkinson-plus syndromes in its speech therapy clinic in Richardson, Texas and also trains speech-language pathologists from other clinics through in-person workshops and online instruction. The organization’s vision is that people with Parkinson’s worldwide will have access to SPEAK OUT!® and The LOUD Crowd®.
US Department of Veteran’s Affairs –
Parkinson’s Disease Research, Education and Clinical Centers (PADRECC)
– Southeast (Richmond) – nearest center to northern Virginia
In 2001, the Veterans Health Administration (VHA) created six Parkinson’s Disease Research, Education and Clinical Centers (PADRECC) to improve care for veterans with Parkinson’s disease and other movement disorders. These specialty centers are located in Philadelphia, Richmond, Houston, Portland, San Francisco, and West Los Angeles.
McGuire VAMC in Richmond, VA is home to the Southeast PADRECC serving the southeastern region of the United States (Virginia, West Virginia, Maryland, DC, North Carolina, South Carolina, Tennessee, Kentucky, Georgia, Alabama, Florida, and Puerto Rico) along with nine Consortium Centers that are part of a Veterans Affairs network of care for veterans with movement disorders.
PD @ Home is a Parkinson’s Telephone Education/Support Conference – available Nationwide by telephone. Held 2nd Tuesday each month from 1-2 pm ET. Call 1-800-767-1750 enter code 54321#.
Elsewhere in the U.S. – smaller organizations listed by state
Parkinson’s Disease and Movement Disorders Resource Center, Neurology Resource Center
Contact: Diane L. Sherman, PhD, Coordinator
phone (603) 653-6672 or -6673 | Diane.L.Sherman@hitchcock.org
Washington state – also Montana, Alaska, Idaho, Oregon
Northwest Parkinson’s Foundation (NWPF)
The NWPF is based in Seattle, WA
“The mission of the Northwest Parkinson’s Foundation is to establish optimal quality of life for the Northwest Parkinson’s Community through awareness, education, advocacy and care.”
We’ve connected with other Parkinson’s organizations around the world and follow them through social media as well.
World Parkinson Coalition
European Parkinson’s Disease Association (EPDA)
Parkinsons South Australia (Parkinson’s SA)
Parkinson’s Disease Support Group Ghana – only on Facebook