Community Involvement and Recognition of Coordinating Staff

Perry Cohen, Ph.D.

Advocacy

• National coordinator for joint activities of PD organizations to pass the Udall Parkinson's Research Act. (1997)
• Arranged meetings with the NIH Director, White House Staff, and NINDS to initiate collaborative relations between NIH and the PD community. (1999)
• Community/patient delegate to the “Parkinson’s Research Agenda” planning meeting. (2000)
• Patient Representative on the FDA’s Deep Brain Stimulation Advisory Panel. (2000)
• NIMH workgroup on Aging and Co-morbidity's for "The Strategic Plan on Mood Disorders Research." (2001)

Testimony

• Testified before an Institute of Medicine Committee on Assessment of the System for Protection of Human Research Participant. (2003)
• Party member for Advocacy groups at National Transportation Safety Board's public inquiry for Medical Oversight on safety policy for people with chronic illness. (March 2003)
• Testified before a Medicare advisory committee on national coverage determination for DBS. (2004)
• Testified for US House of Representatives,  Labor-Health & Human Services Appropriations Sub-committee on NIH funding with Ann Young, MD, President of Society for Neuroscience. (April, 2004)

Professional  Publications and Presentations

• Presentations to European Parkinson's Disease Association (2000); California Neuro Alliance (2001), World Parkinson's Congress. (2006), National Working Group on Evidence Based Health Care - Patient Participation Symposium (2007)
• Invited speaker at FDA's "Kickoff" meeting for renewal of "User Fee" legislation (PDUFA IV). (November, 2005)
• Submitted comments to FDA's docket on the Critical Path Initiative. (July, 2004), PDUFA IV Public Testimony (2007), Conflict of Interest Guidance (2007) 
• Authored and co-authored articles in peer review journals in the fields of health services management, public health, team development, and most recently in psychiatry and neurology on the co-morbidities and costs of Parkinson's disease
• Invited paper "Ethical Issues in Clinical Neuroscience Research: A Patient Perspective." Neuro-therapeutics. (July 2007), scientific journal of the American Society for Experimental Neurotheraputics
• Profiled and featured in websites (Medtronic Activa®, Grassrootsconnection.com); Newspapers (Wall Street Journal, Washington Post, Bloombergnews.com, and others), TV news (Peoria, IL; Lexington; KY); Magazines (Fortune, FDA Consumer), and others.

Wilson DeCamp, Ph.D.

• A retired FDA chemistry reviewer

• Diagnosed with Parkinson's Disease in in 2005.

Linda Herman

Tony Jedlinski

• President of the Chicago Oracle User Group 1988 - 2006
• Secretary of the Midwest Oracle User Group since 1999
• IOUG Board of Directors as Executive V.P. and Director of Web Operations
• 2005 HTML DB Developer of the Year, by Oracle Magazine
• 2002 Chris Wooldridge Award for outstanding contribution and dedication to the advancement of the Independent Oracle User Group IOUG)

Arnold M. Kuzmack, Ph.D

Carolyn Stephenson

Peggy Willocks

Paula Wittekind

Copyright © 2004-2006 Parkinson Pipeline Project.

All rights reserved. Revised: 07/27/08.