People With Parkinson's Advisory Council

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.

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. The Council comprises 14 members who advise PDF on research, education, and advocacy programs.

PDF opened up applications for new members of the PPAC in November 2016 following the August merger of the Parkinson’s Disease Foundation and the National Parkinson Foundation to form the Parkinson’s Foundation. Newly selected members will serve from 2017 to 2020. The Advisory Council's current chair is Daniel Novak, Ph.D., of Fort Worth, TX, and the vice chair is A.C. Woolnough of Sandpoint, ID. As PPAC chair, Novak also serves as a member of the Parkinson Disease Foundation's Board of Directors.

Among the new PPAC members announced in 2014 were the first two individuals on the Advisory Council that are caregivers of people with Parkinson's disease. Prior to this time, all Advisory Council members had been individuals diagnosed with PD. New members announced in 2015 include a retired psychologist, research scientist, and high school principal, all living with Parkinson's disease.

Members of the PPAC are active in a number of areas, including patient education and support, fundraising, and influencing and supporting Parkinson's disease research. Educational and support activities including writing articles on practical topics such as traveling with Parkinson's disease, hosting patient education conferences, and running support groups. PPAC members may also educate the Parkinson's disease and medical community through interviews about living with Parkinson's disease in publications and medical journals. Activities in support of research include speaking in the media about the importance of clinical studies and encouraging participation. Examples of fundraising activities conducted by PPAC members in support of PDF include holding benefit concerts and walk-a-thons. Additionally, the Advisory Council works collectively to support specific research efforts, such as their 2016 fundraiser to raise $25,000 in support of PDF's Community Choice Research Awards.

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