National Parkinson Foundation
 | |
| Founder | Jeanne C. Levey |
|---|---|
| Focus | Parkinson's disease research and resources |
| Location | |
Key people | Paul Blom, Interim-CEO; Michael S. Okun, M.D., National Medical Director; Ariel Y. Deutch, Ph.D., Chief Scientific Advisor; Bernard J. Fogel, M.D., Chairman |
| Website | www.parkinson.org |
The National Parkinson Foundation (NPF), founded in 1957, is a national organization whose mission is to make life better for people with Parkinson's through expert care and research.
Since 1982, the foundation has funded more than $189 million in care, research and support services, and holds the Better Business Bureau Charity Seal of Approval.[1] It has a network in the United States, Canada, and internationally, consisting of chapters, support groups, and medical centers.
In January, 2016, the National Parkinson Foundation and the Parkinson's Disease Foundation signed a letter of intent to merge the two organizations. They are expected to sign definitive merger documents after completion of due diligence, and to complete the merger as soon as possible thereafter.[2][3]
History
The National Parkinson Foundation was founded in 1957 by Jeanne C. Levey, whose husband suffered from Parkinson's disease. Levey worked with the foundation until her death in 1979.[4] Nathan Slewett, a member of the board of directors and attorney, took her place, eventually becoming the president and chairman of the board. Slewett served as Chairman Emeritus until his death in July 2010 at the age of 97.[5] In 2014, Dr. Bernard J. Fogel, dean emeritus of the University of Miami Leonard M. Miller School of Medicine, retired as chairman of the foundation, with John W. Kozyak, Esq., taking his place.[6]
Network
Centers of Excellence
The NPF Center of Excellence network consists of leading medical centers around the globe that deliver care to more than 50,000 people with Parkinson's disease. The network operates on the belief that the best care is a comprehensive approach that addresses the whole person and the full range of symptoms of the disease through research, education and outreach programs. Each Center must meet rigorous criteria for research, comprehensive care delivery, professional education and patient outreach services. Each Center must meet specific criteria regarding research, comprehensive care, professional education and patient outreach services to join the network.[7]
Chapters
The foundation has affiliated Chapters (local or regional or international community organizations), made up mostly of volunteers. The chapters work with the foundation and its Centers of Excellence to develop local programs and regional networks for Parkinson's disease patients and their families.
Programs
Medical care and research
In 2010, the foundation launched its Parkinson's Outcomes Project to track each patient in the centers and their treatments aimed at establishing goals for care. This has resulted in the largest clinical study of Parkinson's patients in the world.[8]
The foundation funds clinical research programs in its centers and extra-murally.[9] The foundation no longer supports basic laboratory research.
Education and outreach
The foundation publishes a print newsletter, The Parkinson Report, three times a year, and a monthly e-Newsletter, Parkinson's Today, about Parkinson's disease research and foundation initiatives. It also publishes videos, webcasts, and booklets addressing common issues Parkinson's disease patients experience in English and Spanish.[10] It offers multiple other resources to patients and caregivers, including online discussion forums,[11] a toll-free helpline, 1-800-4PD-INFO,[12] and a local resources search.[13] November 23, 2015 marked 50,000 calls to the helpline.[14]
The foundation also provides an interdisciplinary training program for health care professionals, Allied Team Training for Parkinson. The curriculum focuses on how to treat Parkinson's in a team-based approach.
Collaborations
The foundation partnered with U.S. Senator Cory Booker in 2014 to create a public service announcement about the symptoms of Parkinson’s disease.[15]
The foundation is part of a collaborative initiative to increase education and awareness about clinical research, resulting in pdtrials.org, where people can find up-to-date information about clinical trials in the United States.
Fundraising activities
The national signature event, Moving Day, raises funds and awareness across different U.S. cities throughout the year with a focus on movement and exercise as a way to combat Parkinson's progression.[16]
The foundation's community fundraising initiative, Team Hope for Parkinson's, raises funds and awareness about Parkinson's disease. Fundraisers have included skydiving, marathons, dancing, the climbing of Mount Everest, and more.
Location
NPF's main office is located at 200 SE 1st St., Suite 800, Miami, FL 33131. NPF can be contacted via telephone by its toll-free Helpline at 1-800-4PD-INFO (1-800-473-4636).
References
- ^ Better Business Bureau Charity Review
- ^ "NPF and PDF Sign Letter of Intent to Merge". NPF Web Site. National Parkinson Foundation. 2016-01-25.
- ^ Parkinson's Disease Foundation (2016-01-25). "NPF and PDF Sign Letter of Intent to Merge". Parkinson's Disease Foundation.
- ^ University of Miami Medicine
- ^ Medpage Today: National Parkinson Foundation Mourns the Loss and Celebrates the Life of Nathan Slewett -- 97, Chairman Emeritus
- ^ PR Newswire: National Parkinson Foundation Welcomes New Board Leadership and Four New Members
- ^ National Parkinson Foundation Center of Excellence Network Listing
- ^ European Parkinson's Disease Association: Parkinson's Outcomes Project: Report to the Community
- ^ Research: National Parkinson Foundation
- ^ www.parkinson.org/library
- ^ National Parkinson Foundation Discussion Forums
- ^ www.parkinson.org/helpline
- ^ www.parkinson.org/search
- ^ [1]
- ^ [2]
- ^ [3]