^^^^^^  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?