Blog Archives: Advocacy

Thanking Nurses During National Nurses Week

Who’s on your Parkinson’s team? For many people with Parkinson’s, nurses are critical members throughout their journey with the disease. In fact, nurses are often the first point of contact for many people with Parkinson’s disease upon receiving a diagnosis. In recent years, PDF has been working alongside nursing leaders to raise awareness of the ways in which nurses improve the lives of people with Parkinson’s and to provide those nurses with the resources they need.  As we are in the midst of National Nurses Week (Friday, May 6 through Thursday, May 12), we want to thank a few nurses… read more Read More

PAIRed Research Into Mood Disorders in PD: Q&A with Dr. Stark-Inbar

Did you know that anxiety and depression are common in Parkinson’s disease (PD)? Both of these fall under the umbrella of mood disorders. But despite being common in PD, they often go undiagnosed (or incorrectly diagnosed) and under-treated. By combining forces, a scientist-patient advocate team involving Alit Stark-Inbar, Ph.D., at UC Berkeley and Ronnie Wanetick, a PDF Research Advocate, is finding solutions. The two received a PDF PAIR Leadership Award to study EMOTE, an iPad app that can help to monitor depression and anxiety throughout the day, and even offers games to help ease symptoms. While the app is still… read more Read More

The Power of Self in Parkinson’s: Q&A with Diane Cook

Are people newly diagnosed with Parkinson’s finding the right support? Many people, when first diagnosed with Parkinson’s, are given little guidance on facing life with a chronic progressive disease. And that diagnosis is life changing — it entails changes to health, relationships, family life, employment and finances. Diane Cook, a member of the PDF People with Parkinson’s Advisory Council, is passionate about changing this. She wants to support the newly diagnosed so they can begin their PD journey on the right foot. Over the past few years, she has developed a program called PD SELF. It provides tools and information… read more Read More

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:

Where Can Women with Parkinson’s Turn?

“I asked one of the best doctors I have seen — and I have worked with a few — about the effect, if any, of menopause on Parkinson’s disease. Her response was ‘estrogen doesn’t cause Parkinson’s disease,’ which wasn’t my question at all. What I remember about her answer was wondering: where can I turn for a better one?” It is striking just how similar Lisa Cone’s comments are to those of 25 other women who joined the Parkinson’s Disease Foundation (PDF) last month in launching our Women and PD Initiative, the first national coordinated effort to improve the health… read more Read More