- National Parkinson Foundation
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National Parkinson Foundation 
Founder(s) Jeanne C. Levey Location Miami, Florida Key people Joyce Oberdorf, President and CEO; Michael S. Okun, M.D., National Medical Director; Ariel Y. Deutch, Ph.D., Chief Scientific Advisor; Bernard J. Fogel, M.D., Chairman Focus Parkinson's disease research and resources Mission Improving the quality of care for people with Parkinson's disease through research, education and outreach Website www.parkinson.org The National Parkinson Foundation (NPF), founded in 1957, is a national organization whose mission is to improve the quality of care for people with Parkinson's through clinical research, education and outreach on Parkinson’s disease.
Since 1982, the foundation has funded more than $155 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.
Contents
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.[2] 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 of 2010 at the age of 97.[3] Dr. Bernard J. Fogel, dean emeritus of the University of Miami Leonard M. Miller School of Medicine, currently serves as chairman of the foundation.
Network
Centers of Excellence
The NPF Center of Excellence network consists of 43 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.[4]
Chapters
The foundation has 43 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.
National Parkinson Care Network
The foundation's national outreach program provides healthcare information to under-served communities, reaching about 3 million people through multi-lingual brochures, community education, media events and training programs for healthcare providers.
Programs
Medical care and research
In 2010, the foundation launched its Quality Improvement Initiative program to track each patient in the centers and their treatments aimed at establishing goals for care.
The foundation funds clinical research programs in its centers and extra-murally.[5] The foundation no longer supports basic laboratory research.
The foundation granted close to one million dollars in research grants in 2010 focused on the early signs of cognitive change in Parkinson's disease and comparative effectiveness to advance the field of public policy.[6]
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.[7] It offers multiple other resources to patients and caregivers, including online discussion forums,[8] a toll-free helpline, 1-800-4PD-INFO,[9] and a local resources search.[10]
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 collaborates with 23andMe to allow up to 10,000 people with Parkinson’s to receive a reduced rate of membership to the Personal Genome Service with the goal of finding new discoveries and therapeutic breakthroughs.[11][12]
The foundation provides support to the Parkinson’s Action Network to advocate for people with Parkinson's disease and their families.
The foundation partners with Gordon Beckham of the Chicago White Sox in the Out of the Park for Parkinson's initiative to raise awareness about Parkinson's disease.[13]
The foundation also partners with the American Parkinson’s Disease Association to host the Young Onset Parkinson Conference series, where people with Parkinson's disease learn tips for daily living and ask advice from Parkinson's disease specialists.[14]
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 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.
In fiscal year 2009-2010, the foundation directed 75% of its spending on mission-related activities and 25% on fundraising and general/administrative combined.
Location
NPF's main office is located at 1501 NW 9th Ave, Miami, FL 33136. NPF can be contacted via telephone at 1-800-327-4545 or by its toll-free helpline at 1-800-4PD-INFO.
References
- ^ Better Business Bureau Charity Review
- ^ University of Miami Medicine
- ^ Medpage Today: National Parkinson Foundation Mourns the Loss and Celebrates the Life of Nathan Slewett -- 97, Chairman Emeritus
- ^ National Parkinson Foundation Center of Excellence Network Listing
- ^ Research: National Parkinson Foundation
- ^ National Parkinson Foundation Awards Nearly $1 Million for Clinical Research
- ^ www.parkinson.org/library
- ^ National Parkinson Foundation Discussion Forums
- ^ www.parkinson.org/helpline
- ^ www.parkinson.org/search
- ^ www.parkinson.org/23andme
- ^ Wired Magazine: Sergey Brin’s Search for a Parkinson’s Cure
- ^ Gordon Beckham announces details of partnership with National Parkinson Foundation
- ^ www.parkinson.org/yopc
External links
Categories:- Parkinson's disease
- Medical and health foundations
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