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.
Have you ever been part of a Parkinson’s research study? This Parkinson’s Awareness Month, PDF says thank you for helping to bring about better treatments at a faster pace. After all, the only way that new treatments and a cure for Parkinson’s can be found is by ordinary people taking the extraordinary step of volunteering in studies.
Two Saturdays ago, in a Washington DC hotel, PDF pulled off an interesting little coup in its long-term bid to bring people with Parkinson’s (and other neurological disorders) into the center of conversations about the process of clinical research and drug development. The occasion was the plenary session on the last day of the annual scientific conference of the American Society for Experimental Neurotherapeutics (ASENT), and the title of the session was: New Models for Collaboration: Patients as Drivers and Partners in Neurological Research. I have served on the Board of Directors of this very worthwhile organization for three years… Read More
Paula Wittekind In the loss of Paula Wittekind, who passed away on November 8, the Parkinson’s community bids farewell to a lovely friend, a fine mind, and a courageous and indefatigable presence. To the end, she fought quietly but effectively against her own infirmities and against the indifference of institutions that she felt could always do more to wage serious war against Parkinson’s. But in all of these ventures – whether it was the legendary Parkinson’s Pipeline Group, which she co-founded, the Parkinson’s Action Network, or my own organization, the Parkinson’s Disease Foundation – Paula served as an effective research… Read More
When I learned of the death of former Senator Arlen Specter two weeks ago, I thought immediately of two people in the Parkinson’s community who I knew would strike just the right chord to pull me out of a mood of regret for the loss of a true champion of medical research in America. I got it right. One was of these was Jim Cordy – a veteran of the 1990’s “Washington Wars” to get Parkinson’s disease recognized – and funded — as a national priority. He was a close colleague of Joan Samuelson (read on), the founder of the… Read More
Last week, we were excited to see a great example of pairing up (the slogan for our Parkinson’s Advocates in Research, or “PAIR” program) at Vanderbilt University Medical Center (VUMC). In an article entitled, “Events honor early patients of novel Parkinson’s study,” VUMC reports on their study of deep brain stimulation surgery as a treatment for early stage Parkinson’s. DBS is approved by the FDA as a treatment for mid stage Parkinson’s, but not for those with earlier stage PD. We were impressed to see how VUMC thanked their volunteers, all people with Parkinson’s, who made the study possible. As… Read More