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^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) Ivan Suzman 49/39/36 [log in to unmask] :-) Portland, Maine land of lighthouses 49 sunny deg. F :-) ******************************************************************** --------- Forwarded message ---------- From: [log in to unmask] To: [log in to unmask] Cc: [log in to unmask] Date: Tue, 16 Mar 1999 12:55:30 -0500 Subject: Re: Meeting with the NIH Director on PD/ Udall Act implementation Message-ID: <[log in to unmask]> ^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) Ivan Suzman 49/39/36 [log in to unmask] :-) Portland, Maine land of lighthouses blowing snow 42 deg. F :-) ******************************************************************** Dear Jeannette and Listmembers, In the state of Maine, for each of the 6 support groups I represented when at the PAN Forum last year, the FULL implementation of the Udall Act is a continued, highest priority matter! We hope that Dr. Fishbach will take a STRONG position, and lead the NIH as a whole forward, after a frustrating and disappointing period of what appears to us to have been insufficient support from Dr. Varmus. We are watching CLOSELY.. Thanks, Mary Yost , Dr. Perry Cohen and Jeannette Fuhr for your work. Ivan Suzman On Mon, 15 Mar 1999 15:55:44 -0600 Leo Fuhr <[log in to unmask]> writes: >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?