Blog Archives: Advocacy

Expression vs. Insensitivity: A Message to Kanye West from a Person with Parkinson’s

From Tom Palizzi Chair, PDF People with Parkinson’s Advisory Council Kanye West is without question a richly talented and multifaceted artist. With utmost respect for freedom of expression and the inherent controversial nature of art in general, there is, however, a fine line between expression and insensitivity. “On Sight,” the opening track on Mr. West’s new album Yeezus, includes the lyrics:

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.

Thank You for Advancing PD Research

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.

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