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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.

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.

From Diane: WPC Final Thoughts

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.

From Peggy: Why I’m at WPC 2013

Some might say, “No way!” but I am attending this week’s 3rd World Parkinson Congress in Montreal, Canada. Many will ask, “Why?” And I say because giving a donation for research is not enough, because being an advocate is not enough, because sharing my story is not enough, because participating in a clinical trial is not enough, because even attending the World PD Congress is not enough, but it shows you that I am serious about finding a cure NOW!

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.