National Organizations
The Parkinson’s Foundation, Davis Phinney Foundation, and Micheal J. Fox Foundation are three of the most trusted sources for clear and reliable information about Parkinson’s Disease (PD). They provide information regarding: symptoms, diagnosis, treatment options, lifestyle strategies (exercise and movement, diet/ nutrition, sleep), emotional well-being, and support for care partners and families. They offer webinars, downloadable guides, videos, community events, and more. Each organization has a slightly different focus.
The Parkinson’s Foundation’s mission is to help people understand Parkinson’s and receive the best possible care at every stage of the disease.
Highlights include:
Parkinson’s HELPLINE: 1-800-473-4636.
Trained specialists answer questions and help callers find resources. This service is available to people living with Parkinson’s, their family members, and caregivers.
Newly Diagnosed Guide
Easy-to-understand information that helps you learn what Parkinson’s is, what to expect, and how to begin managing life with PD.
PD Health at Home
Free on-line programs you can join from home, including gentle exercise, mindfulness, and wellness sessions, designed specifically for people with Parkinson’s and their care partners.
Hospital Safety Guide
Provides important information about staying safe if you are ever hospitalized, including tools to help ensure Parkinson’s medications are given on time.
PD GENEration
Offers free genetic testing and counseling to help you understand whether genetics may play a role in your Parkinson’s.
Centers of Excellence in Parkinson’s Care
The Parkinson’s Foundation sets standards and supports a global network of Medical Centers recognized for their expertise in the care of patients with Parkinson’s. In North Carolina – UNC / Chapel Hill Medical Center and Duke University Medical Center.
Veterans
“Since 2020, the Parkinson’s Foundation and the U.S. Department of. Veteran Affairs (VA) has formally partnered to improve the health, well-being, and quality of life for veterans living with Parkinson’s.”
parkinson.org/living-with-parkinsons/finding-care/veterans
Carolinas Chapter – for local resource
parkinson.org/carolinas
(984) 364-2030
The MJFF is the largest non-profit funder of Parkinson’s research in the world. While their primary focus is to find a cure for Parkinson’s, they strive to use the results of their research to support the development of new strategies to treat people currently living with the disease. They also provide excellent educational resources.
Highlights include:
Parkinson’s 101
Provides an overview of Parkinson’s Disease – including causes , symptoms, diagnosis, treatment, and strategies for maintaining quality of life.
Ask the MD
Dr. Rachel Dolhun, chief medical advisor at the MJF Foundation, talks about a wide range of topics in a series of videos and blogs- from the latest research to the real-life issues people living with Parkinson’s face every day.
Parkinson’s Buddy Network
An on-line community where you can connect with others who have Parkinson’s., ask questions, share experiences, and find support.
Fox Trial Finder
A simple on-line tool that helps you explore research studies you may be eligible to participate in.
PPMI (Parkinson’s Progression Markers Initiative)
A major research study helping scientists better understand how Parkinson’s begins and progresses, with the goal of improving future treatments. Participants respond to a series of surveys.
Founded by Olympic cyclist Davis Phinney after his own diagnosis, this organization emphasizes hope, action, and quality of life.
Highlights include:
Every Victory Counts Manual
A free and comprehensive, easy-to-read guide filled with practical tips and encouragement for living well with Parkinson’s. A companion Care Partner Manual is also available. Both manuals can be accessed in print or digital formats.
Worksheets and Tools
Practical checklists, assessments, and planning tools help you take an active role in managing symptoms, medications, and daily life.
Pedaling for Parkinson’s
A high cadence cycling program offered online, and in person at participating locations. Research suggests regular cycling may reduce Parkinson’s symptoms.
Ambassadors Program
This program connects you to Ambassadors who understand what you’re going through. They have been there themselves and have volunteered to share their knowledge and experience to help others. Ambassadors include people living with Parkinson’s, care partners, and health professionals.
PMD Alliance (Parkinson’s & Movement Disorder Alliance)
www.pmdalliance.org
1-800-256-0966
- General PD information, webinars. videos
- Resource lists
- Movement Disorders Ecosystem
- Online Support Groups with special interests/ needs, such as: Young Onset (YOPD), Single/ Flying Solo, Care Partners, Adult children, and others
APDA – American Parkinson Disease Association
www.apda.org
(800) 223–2732
- General PD information, webinars. videos
- APDA Symptoms Tracker
- Social networks: My Parkinson’s Team and SMART Patients
Brian Grant Foundation
www.briangrant.org
(503) 274-9382
- Parkinson’s Basics
- Webinars, events, blogs, videos- including some less addressed topics like: crafting, art therapy, cooking with PD (demonstrations), socializing, seasonal tips, and more.
Me over PD
www.meoverpd.org
- “Pro-Activities”. An easy-to-read free newsletter with the latest PD information – and an extensive list of upcoming PD webinars being offered by all the reliable and trusted sources.
- “Symptom Map”