Personally, I'd say Bob significantly misread Michael's position and
was rather rude for no good reason.  I think a more careful reading
might lead one to conclude:
- PAN leadership thinks the best way to serve our community is
  to get the funding required to fund research.
- While PAN leadership would like the various parkinsons groups
  to work more closely together the priority for PAN is to get
  the funding, and pressuring the various organizations to merge/
  align their positions, etc. will just result in more infighting.
- While there are still differences, things are moving in the right
  direction.

Seems to me PAN's got the right idea- get the funding, then straighten out the
support groups.


>Date:    Wed, 14 May 1997 20:11:22 -0400
>From:    Bob Chapman <[log in to unmask]>
>Subject: Re: PD Unity answer

>This is a multi-part message in MIME format.

>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?

He's not defending his ego, he's defending his goals and methods.
I think this is appropriate to the list. Clearly some list members
(such as yourself) don't understand PAN very well.

>> 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.

True enough, I'm guessing PAN doesn't want to stir up too much
s*** right now by pointing the finger at particular leaders
of the other organizations.  PAN is not focused on fixing the
support organizations right now.  I bet if you had approached
Michael reasonably he might have shared some insights as to where
the ego problems lay.

>> 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 see nothing paranoid about this position. He seems to be saying
PAN will work with the various groups even if they don't really
want to work together.

>>
>> 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???

No he said cooperation is better than in the past, but not yet perfect.

>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?

The primary obstacle was Newt & company.

>> 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!

I think Michael is saying once the money is allocated the scientists
at the NHI will make sure the best scientists in the field will get
the funds.  No bull there.
>
>
>> 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.

OK Bob, so what have you done to get the Bill passed? And how does
that stack up against PAN'S efforts?

>> 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"

And with people like you tearing down our cause I'm suprised we
aren't dragged into a back alley.

Let's all hope PAN keeps up the good work and that together
we get this bill passed.  Bob - I hope you can channel your
anger into fighting our common enemy.





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