Tag Archives: patient empowerment

Advocate Perspective on Colorado Patient-Centered Research Initiatives

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.

Righting the Clinical Research "Enterprise"

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 Read More

From PPAC: Parkinson’s Isn’t Newsworthy … Until It Personally Touches You

By Peggy Willocks, member, PDF People with Parkinson’s Advisory Council April is Parkinson’s Awareness Month. And it won’t be newsworthy that I came all the way from Tennessee to New York to participate in this past Saturday’s Parkinson’s Unity Walk, where about 10,000 people with Parkinson’s, friends and family “walked” through Central Park as a symbolic gesture to raise funding for research. As a member of the Parkinson’s Disease Foundation’s (PDF) Advisory Council, it isn’t newsworthy that I am also here as a voice of the patient in helping to have better and faster approval of therapies for the debilitating… read more Read More

The Doctor Is "In"… Your Living Room

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.

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