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 recent ice bucket challenge that has raised awareness and funds for ALS has been a huge success. What may have been overshadowed by this success is the reporting of the first solid estimate of how many people in the United States live with ALS – 12,187. It may seem like a small number but it helps many – from families to policy makers – understand what we are up against in solving that disease. While the estimates of people living with Parkinson’s disease are much larger than for those with ALS, the fact of the matter is that our community does not exactly know the… Read More
The Parkinson’s Disease Foundation has long recognized the creative abilities that many people with Parkinson’s disease acquire when living with the disease. We even capture many of these expressions on our website with some of the best examples appearing in our acclaimed annual calendar (which you can now pre-order for 2015 here).
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.