Tag Archives: parkinson’s advocates in research

The Power of the Pen Against Parkinson’s

“Parkinson’s disease is a mimic. It is also a snowflake; no two incidents being identical in symptoms,” writes Gil Thelen, a PDF Research Advocate and longtime newspaper editor from Tampa, FL. With these words, printed last week as part of his Op-Ed, Mr. Thelen has proven how powerful a tool the pen can be in the fight against Parkinson’s.

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

Patient Engagement Works: Lessons from the Learning Institute Year Eight

Two weeks ago, I sat in the back of a conference room in New Jersey, watching events unfold at PDF’s most recent Parkinson’s Advocates in Research Learning Institute, as I have for the past seven years. For the eighth year in a row, we were prepping a group of people with PD and care partners to understand the research process and how they can pair up with researchers to improve it. As I sat there, planning details for the next day and ways to make the training better, I looked up and it hit me – it is working.

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.

Science Summary from SfN 2014

When 30,000 neuroscientists gather together to talk about the brain, what can we learn about Parkinson’s disease? Our team found out at the latest meeting of the Society for Neuroscience (SfN) meeting in Washington, DC, which took place in November. At the meeting, PDF’s James Beck, Ph.D., VP for Scientific Affairs, and Beth Vernaleo, Ph.D., Senior Manager, Research Programs, were joined by PDF Research Advocates Todd Hebb and Paul Zimmet, D.D.S., both of whom live with PD. (Drs. Zimmet and Vernaleo are pictured inset).

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.