Understanding the Brain

People With Parkinson's Advisory Council

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The People With Parkinson's Advisory Council (PPAC) is a committee of people with Parkinson's Disease created to provide the patient perspective to the Parkinson's Disease Foundation (PDF) in developing programs and setting priorities.

Specifically, the PPAC advises PDF on the types of research it funds, the needs of the Parkinson's community, and the informational resources and educational programs it develops. PPAC members also represent the foundation at meetings, conferences, and other local activities within the Parkinson's community.[1]

Selection and Term

PPAC members are selected through an application process. People living with or affected by Parkinson's disease are eligible to apply. Once selected, PPAC members serve a three-year term. The PPAC meets four times per year -- three times by phone and once in person at PDF's New York Headquarters.

PDF is accepting applications to serve via its website through January 24, 2011.[2]

Impact

The PPAC is an example of an initiative to empower patients touched by a disease to have a direct say in how an organization's activities benefit them and their community. The PPAC gives people with Parkinson's a formal seat at the table within PDF, and ensures that the foundation incorporates their perspectives, advice, and experiences into all activities surrounding its mission.[3]

Recent surveys have indicated that nearly 60 percent of patients with Parkinson's disease were not taking advantage of the resources available to them through patient-centered Parkinson's organizations such as PDF.[4] By giving people with Parkinson's a direct voice in how the organization operates, the PPAC attempts to overcome this participation and awareness gap.

One example of the work of PPAC is the Parkinson’s Disease Resource List, a comprehensive guide more than 100 pages long that lists more than 650 resources worldwide to help and inform people with Parkinson's. PDF created the guide after the members of the PPAC voiced the need for a centralized list containing information from a wide array of sources for people at any stage of Parkinson's and their loved ones. The Resource List is now available for free as a print publication and online.[5]

References

External links