The Parkinson’s Disease Foundation (PDF) is pleased to report that five of its Research Advocates represented the community at last week’s Food and Drug Administration’s (FDA) Patient-Focused Drug Development meeting on Parkinson’s Disease in Silver Spring, MD. The community is also invited to share its input with the FDA by taking an online survey, available here.
The meeting was the first of its kind in the Parkinson’s community, providing the opportunity for people living with PD and care partners to share insights about life with the disease and those aspects that need more effective treatments.
PDF Research Advocates, along with other community representatives, helped to highlight symptoms and side effects for which there are few effective treatments. For example, Research Advocates focused on disabling nonmotor symptoms, such as pain and cognitive decline and secondary movement symptoms and complications such as dyskinesia and freezing. They also spoke about the need for medications that can provide a steadier therapeutic effect throughout the day.
The PDF Research Advocates who represented the community were:
- Steve DeWitte, New Preston, CT, person living with PD
- Todd Hebb, Towson, MD, person living with PD
- Becky Houde, J.D., Waltham, MA, person living with PD
- Rosa Kim, West Dundee, IL, former care partner to person with PD
- Kevin Kwok, Pharm.D., San Francisco, CA, person living with PD
“After advocating for patient engagement in the Parkinson’s community for more than a decade, PDF applauds the FDA for hosting this meeting to gather the perspectives of people living with Parkinson’s disease. We thank our team of Research Advocates for helping to highlight unmet needs in Parkinson’s disease and advocate for more effective treatments,” said Veronica Todaro, M.P.H., Vice President, National Programs at PDF.
She later added in an interview with The Pink Sheet, “The meeting shines the light on the need to engage the people living [with] the disease early and often in the development of research priorities and therapies.”
Do you want to join PDF Research Advocates in sharing insights into life with Parkinson's? PDF, in collaboration with the Parkinson’s Action Network invites you to take the anonymous survey below about life with PD by Friday, October 30. Results will be shared with the FDA to help guide its work.