Tag Archives: parkinson’s advocates in research

Transformation, Creation & Life with Parkinson’s: Q&A with John Creveling

How did you spend your summer vacation? John Creveling, a PDF Research Advocate from Philadelphia, PA, spent it sharing his story with the Parkinson’s disease community. At the beginning of the month, John’s story was featured in Neurology Now, a magazine widely featured in doctors’ offices and read by people living with Parkinson’s disease and other neurological diseases.  Just a few days later, the Parkinson’s community voted for John’s photograph, Transformation, to be featured on the cover of PDF’s 2016 Creativity and Parkinson’s calendar. We sat down with John to hear about his own transformation into an advocate for Parkinson’s disease — one… read more Read More

What about the Symptoms We Can’t See? Diane & Scientists Discuss ‘Invisible Faces of PD’

Do you find that your ‘invisible’ symptoms — the ones that people can’t see like sleep issues or dizziness — are the ones that bother you the most? Many people with PD say this is the case, but just 15 years ago, this wasn’t widely known. The good news is that this past April, a group of scientists got together to speak about these symptoms at a meeting, “Non-motor Symptoms: Unraveling the Invisible Faces of Parkinson’s Disease,” hosted by the New York Academy of Sciences (NYAS) in New York, NY. The better news? Diane Cook, a person with PD, and… read more Read More

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.