Tag Archives: parkinson’s advocates in research

Parkinson’s and the President: How Does the $100 Million BRAIN Initiative Announcement Impact our Community?

Dr. Francis Collins, Director of the National Institutes of Health (NIH), introduced him as the “Scientist in Chief.”  And he introduced himself as “the kid who had trouble with high-school physics.”  But there was no mistaking the passion for his subject of the man who stood in front of us in the East Room of the White House this morning, announcing a major federal initiative in brain science. It was President Obama at his rhetorical best, mixing easy banter with a deeply serious expression of his commitment to the brain research initiative that he described as the “next great American… read more Read More

Are You a Driver and a Partner? Notes on ASENT and Patient Collaboration

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 Read More

What Makes Us Distinctive? The PDF Way: A Letter from the Executive Director, Winter 2013

What makes PDF distinctive?  As you may remember from September’s post, I am now answering such questions in my introductory letter for the Parkinson’s Disease Foundation’s quarterly newsletters, and posting them on the PDF blog, so we can begin a conversation with you. In PDF’s recently published Winter 2013 issue, I discussed what makes us distinctive, what we call The PDF Way. How does it play out in our programs? The PDF Way In our research portfolio, The PDF Way means supporting the creative ideas brought to us by scientific teams and individuals — peer-reviewed and time-tested. We provide long-term support to… read more Read More

PAIRing up for Research: The Importance of Saying Thank You

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 Read More

Understanding the Progression of Parkinson’s

Can you predict the progression of Parkinson’s? … or change its course? Last Tuesday, during PDF’s PD ExpertBriefing, “Understanding the Progression of Parkinson’s,” presenter Dr. Ron Pfeiffer had a few suggestions: Dr. Pfeiffer provided facts about PD progression – about the percentage of people with PD who develop certain symptoms or leave their jobs after a certain number of years – but also emphasized that these are general facts.  Each person’s journey with Parkinson’s is very different. He noted that there are no treatments proven to reverse PD, but he also emphasized there are actions people can take, such as… read more Read More

Protecting the People Who Test New Parkinson’s Treatments

We all want better treatments for Parkinson’s.  Tuesday’s announcement that one of PDF’s Research Centers – Rush University Medical Center, in Chicago, IL – received full accreditation from The Association for the Accreditation of Human Research Protection Programs, Inc. (AAHRPP) is another step in the right direction. Fewer than 200 institutions around the country are fully or partially accredited by AAHRPP. Before any new treatment, for PD or another condition, is approved it must first be tested in people – in clinical research studies – to ensure it is safe and effective.  The AAHRPP accreditation means that Rush is following… read more Read More