Recently, two Parkinson’s Disease Foundation (PDF) volunteers helped guide $16 million in government funding for Parkinson’s disease (PD) research.
This spring, Sam Erwin, M.S., M.A., of West Des Moines, IA, and Paul Zimmet, D.D.S., of Reston, VA – both PDF Research Advocates, people living with PD and US Army Veterans – served as consumer reviewers of research funded by the US Department of Defense (DoD).
They reviewed applications from scientists seeking funding through DoD’s Neurotoxin Exposure Treatment Parkinson’s Research program (NETPR). Working alongside scientists, Ms. Erwin and Dr. Zimmet shared their insights as to how the funding could be spent to effectively to advance science and improve the lives of people with Parkinson’s disease.
This is the first time individuals from PD community have participated as consumer reviewers.
“In light of PDF’s decade-long commitment to patient engagement, we are thrilled to see government organizations such as DoD taking steps to involve people living with Parkinson’s in research that impacts their disease. We applaud DoD, along with Ms. Erwin and Dr. Zimmet for working together to ensure patient priorities are part of research to end Parkinson’s,” said Veronica Todaro, M.P.H., Vice President, National Programs, PDF.
“As a person living with Parkinson’s who has served as a PDF Research Advocate for more than seven years, this experience reminded me that we as patients can make a real impact on research,” added Dr. Zimmet. “When it was time to make decisions about research proposals, my voice was not only heard, it was listened to and it was counted."
Ms. Erwin added, "It was exciting, as a PDF Research Advocate, represent my state, my military branch and most importantly, women with Parkinson’s disease. I was able to bring these various perspectives to the table when sharing my insights on which research is most important to those of us living with Parkinson's."
About Patient Leadership at PDF
As part of the Parkinson's Disease Foundation® (PDF®) strategy to end Parkinson's, PDF mobilizes leaders in the patient community. PDF plays an integral role in shaping patient-centered research and care by advising government on research priorities, collaborating with industry to create models of patient engagement and partnering with academic centers to develop groundbreaking programs that reach underserved communities. This work began more than a decade ago with PDtrials, established in 2004 as the first website and coalition to help patients understand and find clinical trials; continued with the creation of the PDF People with Parkinson's Advisory Council in 2006, the first council of its kind in the community; expanded with the growth of the Parkinson's Advocates in Research program since 2008, which has trained more than 260 people with Parkinson's and care partners to serve on the frontlines with professionals seeking better treatments for their disease; and is reaching new communities with the recent launch of the Women and PD Initiative and PD SELF program, which are training patient advocates to address unmet needs. In 2016, PDF is investing $500,000 for patient leadership programs.