Blog Archives: Advocacy

An Update on the BRAIN Initiative

A year or so after President Obama personally announced his signature initiative to create a public-private partnership to improve our understanding of the infrastructure of the human brain, the White House convened 250 of us to hear a report card and plans on progress to date. I was invited — wearing my two hats as President of the Parkinson’s Disease Foundation and Chair of the American Brain Coalition — to attend the September 30 meeting, along with other leaders of the multi-million dollar effort, including those from the National Institutes of Health (NIH) neurology and mental health institutes, neuroscientists, industry reps, professional… read more Read More

Join Me in Changing Research: A Review of PDF’s Learning Institute

In this Q&A, Phil Myers shares his thoughts on volunteering as a PDF Research Advocate, and provides tips for individuals thinking of applying for a spot at our upcoming training for new advocates. Phil and his fellow 230 Research Advocates are part of PDF’s Parkinson’s Advocates in Research program. Q. Why did you apply to the PDF Learning Institute? A. A few years ago, my wife had passed away with a parkinsonism and I had recently been diagnosed with Parkinson’s disease. These experiences fueled my desire to be involved in medical research. But I didn’t have a medical background, so… 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.

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.