In this Q&A, Anne Newbould, a care partner to her husband with PD, shares her experience being involved in the PDF Community Choice Research Award. Last year, when PDF launched the award by asking, “what is the most pressing question for scientists to solve in PD?” she answered: fatigue. Her research priority was selected from amongst hundreds of submissions. This week, to address the symptom she helped to identify, PDF is bringing together experts and advocates in Chicago, IL. Q. What motivated you to submit your research idea for PDF’s Community Choice Research Award? A. My husband of over 40 years, James, has… Read More
A few weeks ago, PDF staff and some of our volunteer Research Advocates attended a symposium that brings together scientists who are all focused on solving Parkinson’s disease: the 28th Annual Parkinson Study Group (PSG) Symposium in St. Louis, MO. The theme of this year’s symposium was disease modification, finding ways to not only ease symptoms, but also to change the progression of the disease. This starts with basic research to better understand what causes Parkinson’s disease, and ends with clinical trials testing drugs or compounds to ease symptoms or, hopefully, prevent Parkinson’s in the first place.
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
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
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.
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.