“I asked one of the best doctors I have seen — and I have worked with a few — about the effect, if any, of menopause on Parkinson’s disease. Her response was ‘estrogen doesn’t cause Parkinson’s disease,’ which wasn’t my question at all. What I remember about her answer was wondering: where can I turn for a better one?” It is striking just how similar Lisa Cone’s comments are to those of 25 other women who joined the Parkinson’s Disease Foundation (PDF) last month in launching our Women and PD Initiative, the first national coordinated effort to improve the health… Read More
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Two weeks ago, I sat in the back of a conference room in New Jersey, watching events unfold at PDF’s most recent Parkinson’s Advocates in Research Learning Institute, as I have for the past seven years. For the eighth year in a row, we were prepping a group of people with PD and care partners to understand the research process and how they can pair up with researchers to improve it. As I sat there, planning details for the next day and ways to make the training better, I looked up and it hit me – it is working.
When opening the Sunday Review section of the New York Times this past weekend, I did a double-take as a topic of much discussion here at PDF was featured front and center – trumping commentary on the state of the economy, international relations and the latest political debate. “Do Clinical Trials Work?,” by Clifton Leaf serves as a primer on some of the key issues that prevail within the clinical research enterprise – the tension between scientific inquiry and patient priorities; the odds that study sponsors take when betting on the success of a potential therapy; and the disconnect between those who… Read More
Yesterday kicked off an exciting and intensive two-day gathering of researchers, health care providers, administrators, patient organizations, people with Parkinson’s and care partners on Long Island, NY. We gathered for the 2013 Merinoff Symposium, “Leveraging Telemedicine to Deliver the Highest Quality of Care to All Parkinson’s Patients,” hosted by the Feinstein Institute for Medical Research at North Shore–LIJ Health System and co-hosted by PDF, other national Parkinson’s organizations and telemedicine organizations.