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On September 9 and 10, fellow Parkinson’s advocates and CAP members Sarah Diaz, Joe Kelley, and Doug DuMond joined me in Washington, D.C. as part of the “Day on the Hill” for us.  This coincided with a nationally coordinated effort by the Fox Foundation and the Parkinson’s Foundation for “education, training, and advocacy” on Capitol Hill.

Joe Kelly and Steve DeWitte discuss with Sarah Diaz and Ruby Rendon advancing support for underserved Spanish PWP‘s at the public policy forum in Washington DC.

Former Pennsylvania Governor Ed Rendell, who is currently living with Parkinson's, opened the Forum by delivering a keynote speech on the morning of Monday, September 9.  And, Parkinson’s program director Beth-Anne Sieber from the National Institutes of Health (NIH) spoke to attendees at lunchtime. 

On the second day of the Policy Forum, advocates from around the country spent the day meeting with senators, representatives and their staff to educate and advocate around three issues:

  • The need for an out-of-pocket cap on prescription drug costs as part of Medicare Part D;
  • Access to mental health care services through Medicare; and
  • Continued increases in funding for Parkinson’s research at the National Institutes of Health (NIH).

Udall Center Directors’ Meeting
In October, I will participate in the Udall Center Directors’ meeting, as a Patient Advocate representing the Pacific Udall Center based at Stanford University.


The NINDS Udall Centers of Excellence program was established in 1997 in tandem with the passage of the Morris K. Udall Parkinson’s Disease Research Act (P.L 105-78).  The primary programmatic goal is to define the causes of and discover improved treatments for Parkinson’s disease (PD).  In 2017, eight Udall Centers pursued high-impact multidisciplinary research, shared research resources and data, and provided active outreach to local patient and advocacy communities.

The annual NINDS Udall Centers meetings provide a forum for participants to discuss recent progress and emergent opportunities in PD research.

Udall Centers Across the Country

  • The Brigham and Women's Hospital, Boston, MA
  • Emory University, Atlanta, GA
  • Johns Hopkins University School of Medicine, Baltimore, MD.
  • Stanford University, Stanford, CA
  • The University of Alabama at Birmingham, Birmingham, AL
  • University of Michigan, Ann Arbor, MI
  • University of Minnesota, Minneapolis, MN
  • The University of Rochester, Rochester, NY
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