August 9, 2014 | by Darcy Blake | The day at Partners in Parkinson’s, one of 11 events across the country, provided new tools and resources to help people with Parkinson’s Disease (PD) optimize their care. Attendees learned about the latest medical strategies in clinical development and they heard some insightful testimony from patients with PD. The event including breakfast and lunch was free, thanks to host Michael J. Fox Foundation, and national presenting partners, The Davis Phinney Foundation, and Parkinson’s Action Network.

The Many Faces of Parkinson’s Disease
After a welcome and Introduction by Sohini Chowdhury, Senior Vice President, Research Partnerships, The Michael J. Fox Foundation, the morning started out with a session titled The Many Faces of Parkinson’s Disease moderated by Dave Iverson, who is traveling the country as the moderator with Partners in Parkinson’s.  In the first session, he interviewed three people who have Parkinson’s Disease (PD). The panelists included Evan Henry, and George L. Johnston, and me.

We explored the effects of the disease, how we dealt with it, and what we’d pass on to others. Exercise, self-confidence, and a positive attitude were mentioned as important factors in addition to our treatments such as Deep Brain Stimulation and medication.

Seeing a Movement Disorder Specialist 
The second breakout Seeing a Movement Disorder Specialist was a peek at what an office visit is like. The doctor was Kathleen Poston, MD, MS, Assistant Professor of Neurology, Stanford University and the pretend patients were Robin and John Katsaros. What a long and thorough visit they had with her!

Parkinson’s Research: The Road Ahead
The third session Parkinson’s Research: The Road Ahead  included Jennifer A. Johnston, PhD and Co-Founder and CSO at An2H Discovery, Caroline M. Tanner, MD, PhD, Director, Parkinson’s Disease Research, Education and Clinical Center, amongst other titles, and Brian Fiske, PhD, Vice President, Research Programs, The Michael J. Fox Foundation.

The team discussed on-going research to target proteins, including alpha-synuclein and LRRK2 that Dr. Johnston explained, “go hand-in-hand with developing biomarkers [disease indicators].” The PD research community needs biomarkers to help speed diagnosis and drug development.

Dr. Tanner praised the Parkinson Progression Markers Initative (PPMI) volunteers, who have agreed to be a part of an observational study for up to five years, giving blood, spinal fluid, and data to find biomarkers that are critical missing links in the search for better PD treatments. The preliminary research from PPMI will make the discovery of biomarkers more promising.

The group talked about the progress of the alpha-synuclein vaccine, which is entering the first human trial as a PD disease vaccine. Called PD01A, the vaccine targets the protein alpha-synuclein that experts think may be a cause in the onset and development of the disease. The Phase I trial is being conducted by AFFiRiS, an Austrian pharmaceutical company.

Dr. Johnston compared alpha-synuclein to waste that can’t “go through the garbage disposal,” referring to the build-up of unwanted Lewy bodies, unusual deposits or clumps of the alpha-synuclein, along with other proteins, which are seen upon microscopic examination of the brain.

The team also touched on the effectiveness of cannabis, described by Dr. Tanner as being effective for pain. They covered the difficulty in generating neuro stem cells, which Iverson compared to “rewiring a house that has already been wired.”

After lunch, there were breakout sessions on Living Well with Parkinson’s, focusing on exercise and nutrition moderated by the Davis Phinney Foundation, Building Connections, moderated by Sohini Chowdhury at MJFF, and I’m Still Wondering About… The event also included a resource fair.

Living Well with Parkinson’s
There were special quotes including one from panelist Barbara Zimmer, a former Olympic track athlete who has had PD for over two decades. She said at Living Well, “PD doesn’t stop your passion, it just stops your ability to express it.” To keep her voice strong, she explained how she practices vocal exercises, which are just as important to her as physical exercise. Even playing the piano is a fine motor exercise for fingers.”

Building Connections
Another notable quote came from former book editor Ann Wasson, a panelist who has also had PD for over two decades. At Connections, she said, “The first relationship you have to live with after being diagnosed is yourself. It’s your life, it’s what you want it to be. I decided to live with hope and humor. Actually, PD has enhanced my humor.”

There were more insights, and much more information. The Parkinson’s Women Support was there in an outstanding turnout. We exchanged lots of emails with people we met, and anticipate some new faces at our lunches. Clearly, this is a great traveling event, and it was day well spent.

About Parkinson’s Women Support
The  mission of Parkinson’s Women Support is to offer moral support, encouragement and camaraderie for women who are either Parkinson’s Disease patients or caregivers. Check out our Facebook page at: https://www.facebook.com/parkinsonswomen

2 thoughts on “A Day at Partners in Parkinson’s

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