Tag Archives: PDF Research Advocates

Cindy Says, #MyPDPriority is Dystonia

Which question about Parkinson’s is your priority for scientists to answer? According to Cindy Bittker, M.S.W., a PDF Research Advocate from Hull, MA, the answer is: dystonia. As part of its Second Annual Community Choice Research Awards (open during April), PDF is profiling members of the PD community who have taken our survey to find out the priorities they suggest for scientists. The survey — open to people with PD and care partners until Thursday, April 30 — asks what is most important for researchers to study regarding specific aspects of the disease, including its symptoms, day-to-day management and treatment. Later in… read more Read More

Two New Drugs for PD: A Caregiver & Advocate Speaks Out

Last month, it was announced that two new drugs were approved by the US Food and Drug Administration, for treatment of Parkinson’s disease (PD). Both drugs, Rytary™ and Duopa™, are updates to carbidopa/levodopa. They offer, respectively, a newer formulation and delivery method to reduce off-times for those with PD. In this Q&A, PDF speaks with Myra Hirschhorn, one of our trained Research Advocates, to understand the community reaction to the approvals. As part of the Parkinson’s Advocates in Research program, Myra has been trained in the drug development process, and educates her community about research.

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.