Genetic Testing: FDA & The Importance of Getting it Right

jbeck.jpgSeveral months ago, I broached the issue of direct-to-consumer genetic testing in PD. There, my message was that you should look before you leap and take the time to understand what genetic testing would tell you (and whether you really wanted to know it). Implicit in that discussion is the need to have accurate results. This is different than the desire to have the weather forecaster tell you if it is going to rain or not tomorrow. For most people, inaccurate weather predictions are a nuisance more than anything.

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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.

erickson_kimerickson_libbeWe 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.

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From Girija: Hope and WPC 2013

In early October, I was in Montreal attending WPC 2013. After a long flight from California, I headed straight to the conference center.

The first thing I noticed as I entered the conference center was the presence of people with Parkinson’s (PwPs) everywhere. Several PwPs were accompanied by their caregivers, some traveled with friends and others looking for friends who were also attending WPC. It seemed like PwP from all over the world congregated in Montreal.

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From Diane: WPC Final Thoughts

Diane Cook

Diane Cook

As I leave Montreal’s WPC 2013, I think back on how I felt leaving Glasgow’s WPC 2010, and the difference is striking.

In Glasgow, I was an attendee two years into my Parkinson’s diagnosis, eagerly absorbing as much as I could by attending every session. By Montreal, I was several years into serving as a PDF Research Advocate, as part of the organization’s Parkinson’s Advocates in Research (PAIR) program.

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