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.
Contents
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.
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. 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.
Activities
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.
Another role members of the PPAC perform is providing the perspective of the Parkinson's disease community on topical current events. For instance, upon the revelation that actor Robin Williams had been diagnosed with Parkinson's Disease prior to his suicide, former Advisory Council chair Linda Morgan wrote a letter to the editor of her local news outlet, explaining that the disease does not lead to an increased risk of suicide. And current Advisory Council chair Daniel Novak provided his perspective on how Muhammad Ali inspired people with Parkinson's disease shortly after the boxer's death.
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.
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. 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 110 pages long that lists more than 750 resources worldwide to help and inform people with Parkinson's. Among the resources offered in the guide are a number specifically aimed at people newly diagnosed with Parkinson's disease and care providers. 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.
Another outcome of the PPAC's work is the launch of new PDF programs to better support people living with Parkinson's disease. An example is the PD SELF (Self-Efficacy Learning Forum) program, established by PDF and PPAC member Diane G. Cook. The program, which launched in 2016, trains patient leaders to share coping tools with individuals who are newly diagnosed with PD.