“At PDF, we are committed to making sure that people with Parkinson’s have a voice in research.”
James Beck, Ph.D.
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PDF's Second Series of Community Choice Research Awards
Who has the next big idea for Parkinson’s disease (PD) research? Last year, the Parkinson’s Disease Foundation (PDF) asked this question as part of our second Community Choice Research Awards survey. We received suggestions from more than 300 people with Parkinson’s and care partners on aspects of the disease they would like researchers to study. From these, PDF selected two: dystonia and cognition. Now, we are investing $40,000 for experts to study these symptoms. To learn more, PDF News & Review sat down with James Beck, Ph.D., Vice President, Scientific Affairs at PDF.
Q. Tell us about the award selections. Why do you think they are important to the community?
I think dystonia and cognition came out on top for two reasons — they are common, and they are disabling. For example, it is estimated that at the time of diagnosis, as many as one quarter of people with Parkinson’s exhibit mild cognitive impairment and many will also go on to develop dementia. Dystonia, a disorder that generates painful muscle contractions, usually in the hands or feet, is also common in PD. It’s easy to see why the community wants better ways of addressing these symptoms. While PDF’s ultimate goal remains finding a cure, it is vital that we also find new ways to help people live better today.
Q. How will PDF’s investments address them?
We are hosting two conferences this summer —one to address dystonia, and the other to study ways in which non-drug therapies can improve cognitive function. For each, we are gathering leaders in Parkinson’s and related areas to assess where we are in understanding and treating these symptoms, and what needs to be done to move the field forward. The dystonia conference is being led by William Dauer, M.D., of the University of Michigan, and the cognition conference, by Jennifer Goldman, M.D., M.S.,of the PDF Research Center at Rush University Medical Center. In each, we are including some of the community members who suggested the research ideas. Having these individuals — people who are struggling with the issues at hand — participate in the conference will remind us all of the urgency for finding solutions.
Q. In its first Community Choice Research Awards in 2014, PDF funded conferences on fatigue and gastrointestinal symptoms. What were the results?
Earlier this spring, the fatigue group, led by Joseph Friedman, M.D., published two scientific papers — one in npj Parkinson’s Disease and the other in Movement Disorders — defining fatigue in PD and making recommendations for future research. Meanwhile, the gastrointestinal group, led by Ronald Pfeiffer, M.D., and Eamonn Quigley, M.D., made progress, with two members writing a guide to help people cope with constipation in PD (contact us at (800) 457-6676 or firstname.lastname@example.org, to order a free copy). Lastly, I am excited to announce that PDF will invest an additional $500,000 in 2017 for research on the four symptomatic areas identified by the community for the last two awards. This fall, we will accept applications for research that aims to ease dystonia, fatigue or gastrointestinal dysfunction, or to improve cognition in PD.
Q. Why does PDF solicit patient feedback?
At PDF, we are committed to making sure that people with Parkinson’s have a voice in research. This is for two reasons. The first is philosophical; we believe that people who live with the disease should be included in discussions about how to better treat it. The second is that people with Parkinson’s have insights that can guide research. They are, after all, experts in what it means to live with the disease. PDF’s experience with our community-driven research awards has proven us right; it has pointed us toward unmet needs that are a significant problem for many but that don’t receive sufficient research funding.
Q. When can the community participate again?
PDF is opening up its third Community Choice Research Awards online survey this coming September 2016, timed to coincide with the 4th World Parkinson Congress (WPC), which is being held in Portland, OR. I encourage our readers to participate. This is your chance to have an impact, to be heard. We are listening.