You may have noticed that PDF has opened up applications for individuals interested in joining our People with Parkinson’s Advisory Council. Our members, all people living with PD and care partners, are driving PDF’s goal of ending Parkinson’s disease. Each member has made unique contributions to PDF’s work to mobilize leaders in science, health care and the patient community to work together toward a cure. How do they do it? Here are four ways:
Do you think of yourself or your loved one as a “caregiver” in life with Parkinson’s disease? There are some people who identify with this term, but many others who do not, which is why when Rhona Johnson, a former member of PDF’s People with Parkinson’s Advisory Council (PPAC) coined the term “care partnership,” PDF thought it fit perfectly.
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
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
What is the relationship between a person with Parkinson’s disease and his or her caregiver? In a special post written during National Family Caregivers Month, we hear perspectives from Marc Sherman, J.D., a person with PD and Elaine Casavant, R.N., a care partner. Both are members of PDF’s People with Parkinson’s Advisory Council.
In this Q&A, Diane Cook shares her experience being involved in the PDF Community Choice Research Award. Last year, PDF launched the award by asking the community, “what is the most pressing question for scientists to solve in PD?” From the hundreds of submissions we received, our advisory board selected two – fatigue and gastrointestinal function – for awards. This fall, we’re hosting conferences to outline solutions for both symptoms. Q. You attended the first ever conference funded by the PDF Community Choice Research Award. What are your overall impressions? A. First of all, it was very exciting to be… Read More