Tag Archives: patient engagement

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.

Two New Drugs for PD: A Caregiver & Advocate Speaks Out

Last month, it was announced that two new drugs were approved by the US Food and Drug Administration, for treatment of Parkinson’s disease (PD). Both drugs, Rytary™ and Duopa™, are updates to carbidopa/levodopa. They offer, respectively, a newer formulation and delivery method to reduce off-times for those with PD. In this Q&A, PDF speaks with Myra Hirschhorn, one of our trained Research Advocates, to understand the community reaction to the approvals. As part of the Parkinson’s Advocates in Research program, Myra has been trained in the drug development process, and educates her community about research.

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).

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

Advocate Perspective on Colorado Patient-Centered Research Initiatives

The following blog post from PDF Research Advocate Kirk Hall of Denver, CO is adapted from Kirk’s post on his own blog, shakypawsgrampa.blogspot.com. Last year, I wrote a blog post about the World Parkinson Congress (WPC) in Montreal, which highlighted a, “movement toward more patient engagement in the PD world.” Before giving an update on patient engagement in my own community in Colorado, here is a brief excerpt from that post from October 2013.