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CORRECTION: In my summary of the NIH Parkinson's Disease Research Planning Meeting (which was recently posted on the listserv), I inadvertently omitted listing the presence and active participation of Dr. Perry Cohen (representing the Parkinson Disease Foundation) when listing those who attended as advocacy representatives. Here's a final posting of the article which will appear in the next issue of the National Parkinson Foundation's quarterly "Parkinson Report" magazine. -Larry Hoffheimer I just returned from the NIH Parkinson's Disease research planning meeting in Washington, DC. I thought all of you on this list would like to see the article I am submitting for the next issue of the Parkinson Report about this historic meeting. Larry Hoffheimer National Institutes of Health Hosts Parkinson's Disease Planning Meeting Parkinson sufferers worldwide will be pleased to know that the National Institute of Neurological Disorders and Stroke (NINDS) has just concluded hosting a two day meeting focusing on defining strategies for research that will most likely lead to better treatments and eventually to a cure for Parkinson's disease. The meeting, entitled the "Parkinson's Disease Planning Meeting" was arranged by Dr. Gerald Fischbach, NINDS Director, assisted by several of his principal professional staff members. The meeting was inspired by language in the House-Senate Conference Report that accompanied the recently enacted Appropriations Bill that funds the National Institutes of Health. The language reads: NIH is expected to consult closely with the research community, clinicians, patient advocates, and the Congress regarding Parkinson's research and fulfillment of the goals of the Morris K. Udall Parkinson's Research Act. NIH is requested to develop a report to Congress by March 1, 2000 outlining a research agenda for Parkinson's focused research for the next five years, along with professional judgment funding projections. The NIH Director should be prepared to discuss Parkinson's focused research planning and implementation for fiscal year 2000 and fiscal year 2001. NINDS has caused the formation of an inter -NIH Parkinson's disease coordinating committee with representatives from NINDS, the National Institute on Aging, the National Institute of Mental Health, the National Institute on Deafness and other Communications Disorders, the National Institute on Nursing Research, the National Institute of Environmental Health Sciences, the National Human Genome Research Institute, and the National Center for Research Resources A Parkinson's Disease Steering Committee has been given the responsibility of overseeing the preparation of the NIH report to Congress following the planning meeting. The members of the Steering Committee are: Mahlon DeLong (Emory University), co-chair, John Marler (NINDS), co-chair, Tom Jessell (Columbia University), Jeff Martin (Parkinson advocate), and Ira Shoulson (University of Rochester). In addition to most of the leading scientists and Parkinson clinicians in the Nation, the following advocacy representatives were invited to be active participants. Nathan Slewett, Chairman of the Board, Larry Hoffheimer, NPF's Washington Counsel, and Bill Koller, NPF Research Director. Robin Elliott, Executive Director of the Parkinson Disease Foundation, Joel Gerstel, Executive Director of the American Parkinson's Disease Association, Joan Samuelson, President of the Parkinson Action Network, Martin Tuchman, Director of the Parkinson Alliance, and Ken Aidekman of the Parkinson Unity Walk. Beginning with a dinner hosted by the advocacy groups, an evening working session took place to set the framework for the next day and a half. Dr. Fischbach expressed his sincere desire to obtain new and creative ideas that the attendees believed should be funded in order to better understand Parkinson's disease and hasten our pursuit towards a cure. For the next day and a half, researchers, clinicians and advocates hammered away at developing new ideas and pathways that were believed to be most promising. Having observed the National Institutes of Health funding behavior for nearly 25 years, I believe that the Parkinson community is receiving an historic scientific review of the NIH's entire Parkinson's disease research agenda. The advocacy efforts are truly beginning to payoff. In the next issue of the Parkinson's Report I will provide our readers with a summary of the National Institutes of Health Parkinson's disease research agenda called for by the United States Congress. Lawrence S. Hoffheimer 1250 24th Street, NW Suite 300 Washington, DC 20037 (202) 466-0577 (202) 466-0585-fax