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Mary Yost forwarded info to list on March 15, 99 that said in part: > > 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. > Mary, Thanks for keeping us up to date on the cooperative efforts of all major PD organizations to establish constructive dialogue among the Institutes and PD groups. Please continue to post any information in this vein to the list. I believe this type of dialogue is what will convince the leaders of the Institutes that the PD community is aware and watching the way the intent of the Udall bill is being carried out. PD is no longer the invisible disease that will receive per patient a minimal amount of research funding. A big thank you to all the participants in this meeting on behalf of pwp everywhere. Jeanette Fuhr 48/47/44?