Tag Archives: PDF Research Advocates

Caring as a Team: Q&A with Paul and Jane Gaydos

How do you show someone with Parkinson’s that you care? Family and friends often rally around a loved one, showing their support in a variety of ways. During November, which is recognized as National Family Caregivers Month, PDF recognizes, “All the Ways Care Partners Care.” Our campaign highlights four diverse stories, including the story of Paul and Jane Gaydos, of Cleveland, OH, PDF Research Advocates (Jane lives with PD) who have been married for 47 years.

Bringing WPC to You

This week, members of the Parkinson’s community are gathering for the 3rd World Parkinson Congress in Montreal, Canada. Can’t make it to Montreal? PDF is bringing the WPC to you. We’ll be reporting straight from Montreal, providing scientific updates, interviews with delegates, photos of the Parkinson’s Quilt display and more. What do you want to know from the meeting? Give us some ideas of the topics you’d like covered. We’ll do our best to report back with help from our on-the-ground reporters, members of our People With Parkinson’s Advisory Council and more than 50 of our Research Advocates (check out their… 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

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