Blog Archives: Advocacy

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.

Care Partner Team Q&A Series

During National Family Caregivers Month this November, PDF calls special attention to care partners who are helping to find a cure for Parkinson’s. We are lucky that among PDF’s network of Research Advocates, (all part of the Parkinson’s Advocates in Research program) there are many talented care partners who are working on the front lines with researchers. In this interview, we highlight two of these PDF Research Advocates, care partner team Kim and Libbe Erickson of Stillwater, MN. They joined the program just two years after Kim’s diagnosis in 2010. Here are their insights.

WPC Posters from the PDF Team

Most scientific meetings include posters by scientists, which summarize their most recent experiments. The 3rd World Parkinson Congress is unique in that it features posters by advocates with Parkinson’s alongside those by scientists. PDF is proud to report that our team had 13 posters at the WPC! This included posters from seven PDF Research Advocates (one doubled up), three PDF staff members, and two PDF-funded researchers. Yesterday we were able to catch up with a few of them. Here’s a summary:

From Robin: The Journey Begins at WPC 2013

Excited. Filled with Anticipation. Overwhelmed, in a good way. And to think it all started close to four months ago, in June. That is when my husband John and I decided to attend the World Parkinson’s Congress 2013. Given the fact that it only happens once every three years, it’s the single largest worldwide gathering of all stakeholders in the Parkinson’s field, and we missed it the last go around — we weren’t going to let that happen again.

Righting the Clinical Research "Enterprise"

When opening the Sunday Review section of the New York Times this past weekend,  I did a double-take as a topic of much discussion here at PDF was featured front and center – trumping commentary on the state of the economy, international relations and the latest political debate. “Do Clinical Trials Work?,” by Clifton Leaf serves as a primer on some of the key issues that prevail within the clinical research enterprise – the tension between scientific inquiry and patient priorities; the odds that study sponsors take when betting on the success of a potential therapy; and the disconnect between those who… read more Read More

Expression vs. Insensitivity: A Message to Kanye West from a Person with Parkinson’s

From Tom Palizzi Chair, PDF People with Parkinson’s Advisory Council Kanye West is without question a richly talented and multifaceted artist. With utmost respect for freedom of expression and the inherent controversial nature of art in general, there is, however, a fine line between expression and insensitivity. “On Sight,” the opening track on Mr. West’s new album Yeezus, includes the lyrics: