Blog Archives: Research

Gil & Kirk Agree, Palliative Care Should be
Priority for Researchers

Which question about living with Parkinson’s is your priority for scientists to answer? For PDF Research Advocates Kirk Hall of Denver, CO, and Gil Thelen of Tampa, FL, the answer is: understanding how palliative care can help people with PD. Gil and Kirk separately completed PDF’s six-question survey as part of the Second Annual Community Choice Research Awards. It turns out that they chose the same topic. We interviewed them to find out why studying palliative care is so important.

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.

Funding the Future of PD Science: Q&A with Student Fellow William Johnson, M.S.

How did you spend your summer vacation? The students supported by PDF’s Summer Student Fellowship Program — a group that includes undergraduates and medical students — spend their summers working on PD-related research projects with mentors who have expertise in the field. Typically, fellowships are offered for 10 weeks with an award of $4,000. Recently, we sat down with former Fellow Will Johnson, M.S., a pharmacology student at Case Western Reserve University, who was awarded funding in 2013, for a project entitled, “Investigating the role of enzyme mediated neuronal protection in Parkinson’s,” to hear about his summer and what he learned about… read more Read More

From Skin Cells to Brain Cells: How PDF Fellows Are Using Genetics to Move the Field Forward

For the past three years, the Parkinson’s Disease Foundation has been funding the research of young scientists in the New York metro area through our Lucien Côté Clinical Genetics Initiative. It’s exciting because in studying how genes are affected by Parkinson’s, we can learn more about what goes wrong with PD overall … even in cases without a genetic cause. Last Wednesday, we had a visit with two awardees and their faculty mentors at PDF’s office to get an update about their research. Both awardees are using an experimental technique called “induced-pluripotent stem cells” where they can actually take skin cells… 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.