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^^^^^^GREETINGS  FROM^^^^^^^^^^
Ivan Suzman  47/10   [log in to unmask]
Portland, Maine   land of lighthouses  50  deg. F
***********************************************************
Dear Listmembers,

I feel that Bob Chapman has done our PWP community a great  service by
pointing out the arrogant style with  which Mr. Claeys  addresses our
beloved Camilla Flintermann.  We all know that Camilla is a godsend to
our caregivers.  PAN is sadly mistaken if it allows its employees to
treat her this way.

(Prof.) Ivan Mfowethu Suzman

On Wed, 14 May 1997 20:11:22 -0400 Bob Chapman <[log in to unmask]>
writes:
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>Mr.Claeys I would like to respond to how your letter (attached) comes
>across to me.
>
>[log in to unmask] wrote:
>
>> From Michael Claeys-PAN
>> ---------------------------------------------
>> Mrs. Flinterman,
>>
>> We received a copy of your email from Barbara Schirloff.  I don't
>> want
>> to spend too much time on this because (1) there is too much
>> important
>> work to do in support of the Udall bill,
>
>Why, then have you waste all of this band width defending your ego?
>Shouldn't this posting be directed to the individual  (Camilla
>Flinterman) rather than to the entire list?
>
>> and (2) continued focus on these issues tends to make the situation
>> worse rather than better.  But
>> you specifically asked is this was something PAN was working on, so
>> I wanted to respond.
>>
>> First of all, I strongly argue that disagreements between the
>> organizations are much more the result of differences of opinion and
>>
>> differing priorities than "ego problems."  It is important to get
>> the
>> facts on these disagreements and to know where each party stands and
>>
>> why, and evaluate to logic and reasonableness of each position,
>> rather
>> than just paint all the parties as equally at fault just for failing
>> to
>> agree.
>
>What are the facts, as you see them and where do you stand and why?
>with
>all of the rhetoric you have espoused and I fail to see where you
>answer
>these questions.
>
>> All this does is punish people for trying to do things the best
>> way, and encourages agreeing just for the sake of agreeing to things
>>
>> that don't make the most sense.
>
>sounds like a touch of paranoia to me.
>
>>
>> I also would argue that currently the cooperation among the national
>>
>> organizations is a good if not better than it's ever been.  I agree
>> it's
>> not perfect, but things are definitely improving, and the Udall bill
>> is
>> one important reason. Further, while greater cooperation among the
>
>> groups and greater commitment of resources by the APDA and NPF would
>
>> certainly improve the chances of passing the Udall bill, I do not
>> think
>> it is accurate to say that the lack of cooperation has been a big
>> obstacle to passage.
>
>Hmnnn! I thought you were trying to say that there was no lack of
>cooperation between the organizations???
>What was the obstacle, do you know? Could it be that we didn't have
>people who were committed to our cause enough to find a way around the
>Politics, which will always be there?
>
>> We came very, very close last year, and I think
>> impartial evaluation of the events of last year would show the lack
>> of
>> action on the Udall bill in the House had more to do with election
>> year
>> politics and other political issues beyond the control of the
>> Parkinson's community rather than whatever internal problems we may
>> have
>> been experiencing.
>>
>> I want to take especially strong exception to the remark that "even
>> when
>> (the Udall bill) passes there will be struggles over who gets what
>> money."  THAT IS ABSOLUTELY UNTRUE!  The Udall bill authorizes
>> additional money be made available to scientists and Parkinson's
>> researchers.  All the grant requests will go through NIH's rigorous
>> peer-review process and will be out of the control, or even
>> influence,
>> of any of the Parkinson's organizations.  Will some of the money go
>> to
>> researchers aligned with one national group or another?  Of course,
>> but
>> only after going through the proper NIH grant submission and review
>> process.  This is just the type of misinformation that exasperates
>> problems rather than helping solve them.
>
>More bureaucratic bull!
>
>>
>>
>> Please be assured that we too are frustrated by the lack of
>> cooperation,
>> communication and commitment to the Udall bill effort demonstrated
>> within our community.
>
>And well you should be frustrated, you are probably part of the cause.
>
>> At the same time, we are committed to not let
>> this matters distract of dissuade us from doing everything we can to
>>
>> achieve the goals of Udall bill passage and greatly increased
>> research
>> funding for Parkinson's disease -- this year!  We greatly appreciate
>> all
>> the hard work by advocates, and will continue to inform, coordinate
>> and
>> support your efforts.
>>
>> Remember, Network President Joan Samuelson and other members of the
>> PAN
>> Board of Directors have Parkinson's; they are highly motivated, very
>>
>> skilled and extremely hard working, and have little patience for
>> anything that does not further the cause of finding the most
>> immediate
>> cure for this disease.
>>
>> Thank you again for your input and for your desire to achieve our
>> common
>> goal.  Please don't ever hesitate to contact us with any questions,
>> comments or requests you may have.
>>
>> Sincerely,
>>
>> Michael Claeys
>> Parkinson Action Network
>> Community Outreach Coordinator
>> 800-850-4726
>> 707-544-2363 Fax
>> [log in to unmask]
>
>  If you choose to respond to my evaluation of your Bureaucratic Crap
>please do so privately, the only reason I have responded through the
>list is to encourage others to state their opinions. Frankly with
>people
>who have your apparent attitude promoting our cause it not hard to
>understand why we have been " put on the back burner"
>
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