Blog Archives: Advocacy

Patient Engagement Works: Lessons from the Learning Institute Year Eight

Two weeks ago, I sat in the back of a conference room in New Jersey, watching events unfold at PDF’s most recent Parkinson’s Advocates in Research Learning Institute, as I have for the past seven years. For the eighth year in a row, we were prepping a group of people with PD and care partners to understand the research process and how they can pair up with researchers to improve it. As I sat there, planning details for the next day and ways to make the training better, I looked up and it hit me – it is working.

Science Summary from SfN 2014

When 30,000 neuroscientists gather together to talk about the brain, what can we learn about Parkinson’s disease? Our team found out at the latest meeting of the Society for Neuroscience (SfN) meeting in Washington, DC, which took place in November. At the meeting, PDF’s James Beck, Ph.D., VP for Scientific Affairs, and Beth Vernaleo, Ph.D., Senior Manager, Research Programs, were joined by PDF Research Advocates Todd Hebb and Paul Zimmet, D.D.S., both of whom live with PD. (Drs. Zimmet and Vernaleo are pictured inset).

Caregiver-Doctor-Patient: Q&A with Dr. Maria De Leon

How do you show someone with Parkinson’s that you care? Family and friends often rally around a loved one, showing their support in a variety of ways. During November, which is recognized as National Family Caregivers Month, PDF recognizes, “All the Ways Care Partners Care.” Our campaign highlights four diverse stories, including the story of Maria De Leon, M.D., of Nacogdoches, TX, a member of PDF’s People with Parkinson’s Advisory Council and a PDF Research Advocate.

Caring as a Team: Q&A with Paul and Jane Gaydos

How do you show someone with Parkinson’s that you care? Family and friends often rally around a loved one, showing their support in a variety of ways. During November, which is recognized as National Family Caregivers Month, PDF recognizes, “All the Ways Care Partners Care.” Our campaign highlights four diverse stories, including the story of Paul and Jane Gaydos, of Cleveland, OH, PDF Research Advocates (Jane lives with PD) who have been married for 47 years.

All the Ways Care Partners Care: Q&A with Elaine & Len Casavant

How do you show someone with Parkinson’s that you care? Family and friends often rally around a loved one, showing their support in a variety of ways. During November, which is recognized as National Family Caregivers Month, PDF recognizes, “All the Ways Care Partners Care.” Our campaign highlights four diverse stories, beginning with Elaine Casavant, R.N., a member of the PDF People with Parkinson’s Advisory Council, whose husband Len lives with Parkinson’s.

Making GI a Priority for Parkinson’s Research

In this Q&A, Diane Cook shares her experience being involved in the PDF Community Choice Research Award. Last year, PDF launched the award by asking the community, “what is the most pressing question for scientists to solve in PD?” From the hundreds of submissions we received, our advisory board selected two – fatigue and gastrointestinal function – for awards. This fall, we’re hosting conferences to outline solutions for both symptoms. Q. You attended the first ever conference funded by the PDF Community Choice Research Award. What are your overall impressions? A. First of all, it was very exciting to be… read more Read More