Blog Archives: Advocacy

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

A.C. Weighs In: Can PD Researchers Study Apathy?

Which aspect about living with Parkinson’s is your priority for researchers to study? For PDF Research Advocate A.C. Woolnough, the answer is: apathy. Apathy, which is a lack of interest or enthusiasm, is a common complaint among people with Parkinson’s and loved ones but has not received much research attention. A.C. shared apathy as his priority by taking PDF’s six-question survey as part of the Second Annual Community Choice Research Awards. Below, we interviewed him to find out why he thinks researchers should spend more time studying apathy. There’s still time for you too to submit. PDF is accepting survey submissions… read more Read More

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.

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.