Tag Archives: PDF Research Advocates

PAIRed Research Into Mood Disorders in PD: Q&A with Dr. Stark-Inbar

Did you know that anxiety and depression are common in Parkinson’s disease (PD)? Both of these fall under the umbrella of mood disorders. But despite being common in PD, they often go undiagnosed (or incorrectly diagnosed) and under-treated. By combining forces, a scientist-patient advocate team involving Alit Stark-Inbar, Ph.D., at UC Berkeley and Ronnie Wanetick, a PDF Research Advocate, is finding solutions. The two received a PDF PAIR Leadership Award to study EMOTE, an iPad app that can help to monitor depression and anxiety throughout the day, and even offers games to help ease symptoms. While the app is still… read more Read More

Improving Palliative Care Throughout the PD Journey: Q&A with Kirk Hall and Gil Thelen

As part of our scientific funding, the Parkinson’s Disease Foundation (PDF) is investing more than $90,000 in Conference Awards in 2015. Through this program, we fund gatherings of experts to address unsolved questions in Parkinson’s, such as, “how can we improve palliative care in Parkinson’s at every stage of the disease?” In October, we hosted a conference to answer this question. Led by Benzi Kluger, M.D. of the University of Colorado, it included a global group of scientists, doctors, health professionals and PDF Research Advocates Kirk Hall of Denver, CO, and Gil Thelen of Tampa, FL. Below, Kirk and Gil report… read more Read More

From Diane: It’s Our Time to Speak Up

Which part of living with Parkinson’s disease should be the priority for scientists to study? For Diane Cook the answer is: cognitive issues. She submitted her answer through the Second Annual PDF Community Choice Research Awards survey. Now she is urging you to share yours by Thursday, April 30. Diane worked closely with PDF to develop the first Community Choice Research Awards survey last year, which are a “people’s choice” for PD research grants. The ProjectSpark Foundation run by Diane’s children donated funds for the awards. Hear from Diane about why the “people’s choice” awards are critical for PD research, why she… read more Read More

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.