Tag Archives: people with parkinson’s advisory council

Four Ways People with PD Are Guiding Our Work to End PD

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:

The PD Partnership: A Care Partner’s Perspective

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.

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

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

Patient and Caregiver: Side-by-Side Perspectives from Marc and Elaine

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.