Let it snow, let it snow, let it snow in Washington DC!


The snow day shut down Congress but it didn’t stop the Parkinson’s Policy Forum in Washington DC where three-hundred advocates for Parkinson’s disease gathered on March 19–21, 2018 to visit their lawmakers!


Parkinson’s Policy Forum | March 19-21, 2018 | Washington DC


On the way to the airport, my cab driver advised “don’t over-commit.” His words may ring true for taxi service, but for Parkinson’s disease advocates, the motto is more like “whatever it takes.”

The snow was no excuse to freeze. PD advocates were determined to make every minute matter. They made public service videos for social media, reviewed facts, and figures, and called their lawmakers to schedule future meetings.


Advocate Steve Spencer from California and his working dog, Nandi practice their script.


The respite from the weather gave some attendees from across the country a chance to meet each other. Other advocates found offices still open in the Capitol, and braved the snow to snag last-minute meetings with legislative aides.


Advocates from Georgia, West Virginia, Florida and Iowa


One Voice for the Parkinson’s Community

In 2017, the Parkinson’s Disease Foundation and the National Parkinson’s Foundation merged to become the Parkinson’s Foundation.  The newly-formed Parkinson’s Foundation joined forces with the Michael J Fox Foundation to co-sponsor the 2018 Public Policy Forum, united as one voice for the Parkinson’s community.

The Unified Parkinson’s Advocacy Council UPAC, a consortium of 17 national, regional and state PD organizations was also represented at the event.

The message of unity presented by the co-sponsors of the Parkinson’s Policy Forum was noted by many attendees. Participants sat, danced, and applauded with each other as one community, not separated by state.

Our agenda focused on asking Congress for the following in the fiscal year 2019:

$38.4 Billion for the National Institutes of Health (NIH) Parkinson’s research

$20 Million for the Department of Defense (DoD) Parkinson’s Research

$5 Million for the National Neurological Conditions Surveillance System, a comprehensive database for Parkinson’s research.



John Lehr, President & CEO, Parkinson’s Foundation & Darcy Blake, http://www.parkinsonswomen.com

John Lehr, President and CEO, Parkinson’s Foundation and Todd Sherer, PhD, The Michael J. Fox Foundation welcomed the crowd. Dave Iverson, Contributing Editor, MJFF moderated, weaving speakers into conversation with Ted Thompson, JD: Senior Vice President of Public Policy, MJFF, Jim Beck, PhD: Chief of Scientific Officer, Parkinson’s Foundation, Walter Koroshetz, MD: Director of the National Institute of Neurologic Disorders and Stroke, and Carlie Tanner, MD, PhD: Professor of Neurology, University of California, San Francisco.

Jennifer Haberkorn, Senior Health Care Reporter, POLITICO Pro and Julius Hobson, Jr., Senior Policy Advisor, Polsinelli discussed the Congressional landscape followed by a rousing mini-vocal workout with Samanta Elandary of Parkinson Voice Project.


Parkinson’s advocate Helena Rodriguez of New York meets Senator Cory Booker (D-NJ)


The breakfast keynote speech by Senator Cory Booker (D-MJ) speech was incredibly moving. There wasn’t a dry eye in the house as the gifted orator discussed his dad’s experience with PD and the need to fund Parkinson’s.



Check out the video of his speech here:




Leslie Chambers: President and CEO, American Parkinson Disease Association and Peggy Tighe, Esq.: Principal, Powers Law Firm set the scene on the Hill, and Amy Carlson, Davis Phinney Foundation Ambassador put some snap back into the audience with an exercise session.

Peter Schmidt, PhD: Senior Vice President, Chief Research and Clinical Office, Parkinson’s Foundation moderated a great talk on the role of care systems with Terry Ellis, PhD, PT, NCS: Assistant Porfessor of Physical Therapy, Boston University; Stepahine Katz, JD, MPH: Associate Director of Public Policy, MJFF; and Richard Smeyen, PhD: Professor of Neuroscience, Thomas Jefferson University. Gary Rafaloff from New Jersey and Leslie Peter’s from Colorado gave a personal point of view. MJFF staff Sarah De Napolo, and Brittany Meyer, and Kevin Schultz from Soapbox Consulting reviewed logistics. Carol Walton: CEO, The Parkinson Alliance and Seth Turner: Director of Citizen Engagement, Congressional Management Foundation, spoke on relationship building with lawmakers.

Special moments…aside from Cory Booker’s poignant speech


I met scientist/researcher Dr. Marcia Ratner a renowned neurotoxicologist from Vermont, known for her expertise  in occupational and environmental neurotoxicology. Dr. Ratner completed an NIH/NIA (National Institute on Aging) funded Post Doctoral Fellowship in the Biochemistry of Aging under the guidance of Dr. David H. Farb in the Department of Pharmacology and Experimental Therapeutics at the Boston University School of Medicine.


Advocates in the 2015 Women and PD Initiative, and the 2018 Policy Forum  Lisa Cone,  Kelly Weinschreider, and Sam Erwin


I reconnected with advocates Lisa Cone of Colorado, Kelly Weinschreider of Illinois, and Sam Erwin of Iowa. They were attendees of the 2015 Parkinsons’ Disease Foundation Women and PD Initiative. They’ve each been active in projects regarding women with PD.

I was thrilled to meet Samantha Elandary, MA, CC-SLP, Founder and CEO of Parkinson Voice Project. The Voice Project has a new Online Self-Study Training and Hands-on Workshop.

Over pancakes and coffee in a nearby restaurant, I met advocate and athlete John Ryan and his wife Barbara from New Jersey. We just about cried in our lattes remembering Senator Booker’s speech.


kae_3969A few minutes at the National Portrait gallery with attendee Kae Spencer from California gave us a chance to power up with inspiration at the new exhibit of glowing portraits of Barack Obama and Michelle Obama.





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