The Parkinson's Action Network

www.parkinsonsaction.org

"The Longitude Expedition is driven by a possible dream: the speedy cure of Parkinsonís disease. During their travels, the Drive Around the World team will learn and share the story of that international effort, and benefit world-class research at the same time. I expect great results from this impressive adventure."

- Joan Samuelson, President
Parkinson's Action Network


About The Parkinson's Action Network

The Parkinson's Action Network (PAN) is the unified advocacy voice of the Parkinson's community, fighting for a cure within five years. Through education and interaction with the Parkinson's community, scientists, policy and opinion leaders, and the public at large, PAN advocates for increased and accelerated investment of public resources to ease the burden and bring a cure to the million Americans who suffer from Parkinson's.

Parkinson's disease and related disorders afflict approximately 1 million Americans, approximately 40 percent of whom are under the age of 60. It is estimated that Parkinson's disease costs society $25 billion or more annually. Yet, the federal program for Parkinson's research is grossly under-funded. Parkinson's research receives far less support than most other disorders, totaling only $41 per patient in direct funding in 1998.

The Objectives of the Parkinson's Action Network are:

Research: Strengthen the Parkinson's research program, through increased federal funding and coordinating efforts by the several Parkinson's-related institutes of the National Institutes of Health with those in the private sector.

Awareness: Increase public awareness of Parkinson's disease and its impact on individuals, health costs, and the country as a whole.

Education: Inform Congress and the Administration-directly and through grassroots advocacy-of the needs and the impact of their decision-making on the Parkinson's community.

Influence: Increase the involvement and influence of those living with Parkinson's disease in federal and state legislation, using the Morris K. Udall Parkinson's Research Act and the appropriations process. Use the same influence to speed regulatory approval of Parkinson's treatments, ensure Medicare and private compensation for experimental therapies, and prevent employment discrimination against Parkinson's-affected workers

Network: Develop an informed and effective grassroots network-involving individuals afflicted with the disease, their families, Parkinson's foundations, support organizations and active physicians and scientists.