By Alan and Cherry Zimmerman Recently, we were asked through the PDF Community Choice Research awards to choose our top priority for Parkinson’s research. We chose caregiver needs. (See our photo at left, or a larger version here.) As you may know, PDF spends $5 million a year on research to solve, treat and end Parkinson’s disease. Through the Community Choice Research Awards, PDF asks the community to help identify other unmet needs not being addressed by research.
“I used to be a ‘do-er.’ Now I’m a ‘half do-er.’” These are the words Kris Gjerde, a PDF Advocate from St. Paul, MN, used to explain why she voted for apathy in the Third PDF Community Choice Research Awards survey. She wants solutions so she can keep doing the things she loves. Since the survey launched earlier this month, she and more than 500 people with Parkinson’s and care partners have voted for their research priorities, ranging from sleep issues and anxiety, to gait difficulties and dyskinesia. Why is Kris’ feedback — and yours — so important?
“Can’t” isn’t part of Alan Zimmerman’s vocabulary. That’s why he is on a mission to end Parkinson’s disease, along with an enthusiastic team. This month, he and fellow members of the PDF People with Parkinson’s Advisory Council (PPAC) are launching a special team fundraiser to support PDF research programs. Their goal? Raise $25,000 to support PDF’s Community Choice Research Awards, which support research into unmet needs in PD that are identified by the community. Hear from Alan, known by friends as “Z man,” about why he’s excited to work with his PPAC team to make a difference.
Why is it important to solve fatigue in PD? First, it is a debilitating symptom experienced by many people with PD; yet it is difficult to diagnose and treat. Perhaps more importantly, it is a symptom that people with PD and care partners told PDF was important when voting in the first Community Choice Research Awards survey. This past October, I was pleased to lead a PDF Conference on Fatigue in PD in Chicago, IL. Because this meeting and subsequent research were inspired by the community, my colleagues and I feel it is important to let you know what happened… Read More
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.