National Parkinson Foundation

National Parkinson Foundation

Founder	Jeanne C. Levey
Focus	Parkinson's disease research and resources
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
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 $180 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.

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 2010 at the age of 97.^[3] In 2014, Dr. Bernard J. Fogel, dean emeritus of the University of Miami Leonard M. Miller School of Medicine, currently retired as chairman of the foundation, with John W. Kozyak, Esq., taking his place.^[4]

Network

Centers of Excellence

The NPF Center of Excellence network consists of 39 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.^[5]

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.

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. This has resulted in the largest clinical study of Parkinson's patients in the world. ^[6]

The foundation funds clinical research programs in its centers and extra-murally.^[7] 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.^[8]

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.^[9] It offers multiple other resources to patients and caregivers, including online discussion forums,^[10] a toll-free helpline, 1-800-4PD-INFO,^[11] and a local resources search.^[12]

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.^[13]^[14]

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.^[15]

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.^[16]

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 2012-2013, the foundation directed 74% of its spending on mission-related activities and 26% on fundraising and general/administrative combined.

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).