Dr. Perry Cohen, from the Washington D.C. area, asked me to post this for
him to the List:
From: [log in to unmask]
Subject: Meeting with NIH Director on PD
On Tuesday, March 9th representatives from PD organizations and PWPs met with
the NIH Director, Dr. Harold Varmus, and the Directors of Institutes heavily
engaged in PD Research -- National Institute of Neurological Disease and
Stroke (NINDS--Dr. Gerald Fischbach) and National Institute on Aging (NIA--Dr.
Richard Hodes). The purpose of the meeting was to initiate a dialogue with
NIH officials on ways that PD organizations can assist the NIH in implementing
the Udall Act and ultimately in expediting discoveries that result in cures
for PD (i.e., treatments that reverse symptoms). All major national PD
organizations -- including NPF, APDA, PDF, PAN -- participated in the process
of planning the meeting. Invited participants from the Parkinson's Community
were Mr. Larry Hoffheimer, Mr. William Turenne, Mr. Paul Smedberg, Ms. Joan
Samuelson, Mr. Michael Claeys, Mr. Clarence Kipps, Ms. Kathleen Kenety, and
Dr. Perry Cohen. Due to inclement weather, not everyone was able to attend
the meeting, but the preliminary meeting and discussions to plan the meeting
had already attained the objective of establishing a constructive dialogue
among the Institutes and PD groups.
Follow-up of this effort will be primarily through the lead agency for PD
research, NINDS, and its Director, Dr. Gerald Fischbach. Dr. Fischbach, who
assumed his position only a few months ago, is very committed to PD research
and has welcomed the opportunity to work with the Parkinson's community. In
preliminary meetings and discussions with Dr. Fischbach and other NINDS
officials as well as in the meeting with Dr. Varmus, a range of plans and
actions were identified to fully implement the Udall Act and even go beyond.
Issues discussed included:
-- the PD community support for recent rulings of the NIH to continue stem
cell
research and the efforts of some in Congress to double the NIH budget over
5
years.
--the coordination of PD activities across Institutes at the NIH,
--input from the PD community into the NIH coordinated planning process,
--epidemiology and data for planning and research into causes and treatment
of
PD,
--the initiation of annual scientific conferences to identify research
opportunities
in areas of surgical treatments, medical treatments, and patheogenisis,
--the NIH definition of "focused" (Appropriations Committee Report Language)
research and other matters related to accountability to demonstrate
implementation of the Udall Act.
