The Parkinson’s Disease Foundation (PDF) aims to fund research of the highest caliber. But who says decisions about science should be made only by scientists? Shouldn’t the wider community have a say? This is the philosophy that drives Parkinson’s Advocates in Research (PAIR), a signature program of PDF. The program’s 200 Research Advocates are pairing up with scientists around the US to speed new treatments for PD. Some of them — including Bob Zimmerman, Ed.D. (BZ), and Marilyn Phillips, P.T. (MP) — are doing so by helping PDF to choose the research projects we fund.
Q: Can you tell us about your role as a PDF Research Advocate?
BZ: I have been an active PDF Research Advocate since completing one of PDF’s Learning Institutes in 2010. This was my second year reviewing grants for PDF’s Summer Fellowship program. Our focus was to select promising research projects designed by students who are interested in pursuing careers in Parkinson’s.
MP: I completed my training as a PDF Research Advocate at one of PDF’s regional Learning Institutes in 2012 along with my husband Jay, who lives with PD. As a PDF Research Advocate, I was invited to review submissions for PDF’s Conference Award. The intent is to fund meetings of scientists who focus on unsolved questions about Parkinson’s.
Q: How did your roles as PDF Research Advocates and professionals impact the review?
BZ: Along with other reviewers, I was asked to rank applications from one (the best) to 10. I spoke several times during the process to PDF Research Advocate Max Elden, who was also a reviewer. We agreed that our main priority in representing people living with Parkinson’s was this: which research projects would impact the lives of people with PD most immediately?
We both felt that our input was heard. For example, there was one project that was our second choice, but had not rated among the top five of the scientist-reviewers. We argued that this project, which was studying important research into exercise, was important for us as people with PD because we could see the advantages of it immediately. Our advice changed the rankings, and the project was funded.
MP: Each reviewer answered questions about the proposals, and PDF then invited us to join a conference call to discuss our differences of opinion. The reviewers came to the process with different perspectives, yet we were all looking for research that had tangible outcomes and would address unmet needs of people with PD. Conferences allow researchers to think about emerging ideas. We all felt that one proposal on a falls prevention conference would enable this type of thinking, and guide future research to help people with PD. Just as Bob said that his voice was heard by the research community, I feel that mine was too. As a professional, I was able to verify the relevance of this proposal to present-day research. And as a PDF Research Advocate, I was able to place the proposal in the context of the bigger picture of PD science.
What would you like readers to know about research advocacy in general?
BZ: I would encourage others to be part of the process. I was diagnosed 24 years ago. Once I went through training for this program, I felt much more comfortable with my PD. It was much easier for me to say, “let’s look at clinical trials and what part we all can play in advancing them.” In that way, I think research advocacy is about helping people to understand that they can play a part in research.
MP: Research advocacy helps to shape the focus and scope of clinical research. This is vitally important to all, given our common goal of seeking substantial, timely advances in Parkinson's disease research with always limited resources.
PDF's PAIR program provides people touched by Parkinson's with skills needed to "pair up" with the research community in speeding new treatments. To learn more, visit www.pdf.org/pair. To browse PDF-funded research grants, which were selected with the help of Bob and Marilyn, visit www.pdf.org/results_funded.