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Ron barber wrote:

> 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.

   Ron, Thanks for your input.

I would first like to say that I hope no one else got the same opinion
as you about my response to Michael Claeys' message regarding Camilla
Flinterman.
I have absolutely no complaint about the hard work and effort put forth
by Joan Samuelson and other s on the PAN staff and in fact I THANK them
and commend them for their hard work and nearly successful efforts and I
feel confident they will achieve our common goal this year. This
includes the efforts of Mike Claey. As far as the cooperation between
the various groups are concerned I believe that you are entitled to your
opinion and I support your right to that opinion, mine just happens to
be very different.

As far as trusting where the money goes, if it is funded, I think PAN
should SAY they think it will be well spent so that it will get funded
and we will at least get some of it. however I think it is naive to
believe it won't be subject to the same waste and misappropriations all
of the other moneys our federal government gets their hands on, such as
our taxes and social security, but that's another subject.

Let me say again that my "anger" was directed at the seeming  FLAMING of
Mrs. Flinterman rather than spending time and effort on the job at hand
of getting the Udall Bill Passed, and when it is funded I hope your
trust in the money going to the right places and not mine.

I do agree I was probably rude in my statements about Mike Claey
probably being part of the cause of the Udall not being passed in the
last session of congress. I don't blame Michael Claey individually, or
PAN or any of the other of the organizations and I apologize for that
comment.  What I should have said is that if there had been more
cooperation maybe, just maybe, we wouldn't be having this discussion And
speaking of apologies,

Judging from the lack of list members response to this subject I believe
any further conversation of this thread should be private. I think I
have said about all, probably more than needs to be said

PAN and ALL of your team good luck in your future efforts on our behalf.
I hope I haven't detoured anyone from their course and I do appreciate
your efforts. I feel confident that this will be the year.

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Ron barber wrote:

<BLOCKQUOTE TYPE=CITE>Personally, I'd say Bob significantly misread Michael's
position and
<BR>was rather rude for no good reason.&nbsp; I think a more careful reading
<BR>might lead one to conclude:
<BR>- PAN leadership thinks the best way to serve our community is
<BR>&nbsp; to get the funding required to fund research.
<BR>- While PAN leadership would like the various parkinsons groups
<BR>&nbsp; to work more closely together the priority for PAN is to get
<BR>&nbsp; the funding, and pressuring the various organizations to merge/
<BR>&nbsp; align their positions, etc. will just result in more infighting.
<BR>- While there are still differences, things are moving in the right
<BR>&nbsp; direction.
<BR>
<BR>Seems to me PAN's got the right idea- get the funding, then straighten
out the
<BR>support groups.
<BR>
<BR><I>&gt;Date:&nbsp;&nbsp;&nbsp; Wed, 14 May 1997 20:11:22 -0400</I>&nbsp;
<BR><I>&gt;From:&nbsp;&nbsp;&nbsp; Bob Chapman &lt;[log in to unmask]&gt;</I>&nbsp;
<BR><I>&gt;Subject: Re: PD Unity answer</I>&nbsp;
<BR>
<BR><I>&gt;This is a multi-part message in MIME format.</I>&nbsp;
<BR>
<BR><I>&gt;Mr.Claeys I would like to respond to how your letter (attached) &gt;comes</I>&nbsp;
<BR><I>&gt;across to me.</I>&nbsp;
<BR>
<BR><I>&gt;[log in to unmask] wrote:</I>&nbsp;
<BR>
<BR><I>&gt;&gt; From Michael Claeys-PAN</I>&nbsp;
<BR><I>&gt;&gt; ---------------------------------------------</I>&nbsp;
<BR><I>&gt;&gt; Mrs. Flinterman,</I>&nbsp;
<BR><I>&gt;&gt;</I>&nbsp;
<BR><I>&gt;&gt; We received a copy of your email from Barbara Schirloff.&nbsp; I
don't</I>&nbsp;
<BR><I>&gt;&gt; want</I>&nbsp;
<BR><I>&gt;&gt; to spend too much time on this because (1) there is too much</I>&nbsp;
<BR><I>&gt;&gt; important</I>&nbsp;
<BR><I>&gt;&gt; work to do in support of the Udall bill,</I>&nbsp;
<BR>
<BR><I>&gt;Why, then have you waste all of this band width defending your ego?</I>&nbsp;
<BR><I>&gt;Shouldn't this posting be directed to the individual&nbsp; (Camilla</I>&nbsp;
<BR><I>&gt;Flinterman) rather than to the entire list?</I>&nbsp;
<BR>
<BR>He's not defending his ego, he's defending his goals and methods.
<BR>I think this is appropriate to the list. Clearly some list members
<BR>(such as yourself) don't understand PAN very well.
<BR>
<BR><I>&gt;&gt; and (2) continued focus on these issues tends to make the &gt;situation</I>&nbsp;
<BR><I>&gt;&gt; worse rather than better.&nbsp; But</I>&nbsp;
<BR><I>&gt;&gt; you specifically asked is this was something PAN was working on,
so</I>&nbsp;
<BR><I>&gt;&gt; I wanted to respond.</I>&nbsp;
<BR><I>&gt;&gt;</I>&nbsp;
<BR><I>&gt;&gt; First of all, I strongly argue that disagreements between the</I>&nbsp;
<BR><I>&gt;&gt; organizations are much more the result of differences of opinion
and</I>&nbsp;
<BR><I>&gt;&gt;</I>&nbsp;
<BR><I>&gt;&gt; differing priorities than "ego problems."&nbsp; It is important to
get</I>&nbsp;
<BR><I>&gt;&gt; the</I>&nbsp;
<BR><I>&gt;&gt; facts on these disagreements and to know where each party stands
and</I>&nbsp;
<BR><I>&gt;&gt;</I>&nbsp;
<BR><I>&gt;&gt; why, and evaluate to logic and reasonableness of each position,</I>&nbsp;
<BR><I>&gt;&gt; rather</I>&nbsp;
<BR><I>&gt;&gt; than just paint all the parties as equally at fault just for failing</I>&nbsp;
<BR><I>&gt;&gt; to</I>&nbsp;
<BR><I>&gt;&gt; agree.</I>&nbsp;
<BR>
<BR><I>&gt;What are the facts, as you see them and where do you stand and why?
with</I>&nbsp;
<BR><I>&gt;all of the rhetoric you have espoused and I fail to see where you answer</I>&nbsp;
<BR>these questions.
<BR>
<BR>True enough, I'm guessing PAN doesn't want to stir up too much
<BR>s*** right now by pointing the finger at particular leaders
<BR>of the other organizations.&nbsp; PAN is not focused on fixing the
<BR>support organizations right now.&nbsp; I bet if you had approached
<BR>Michael reasonably he might have shared some insights as to where
<BR>the ego problems lay.
<BR>
<BR><I>&gt;&gt; All this does is punish people for trying to do things the best</I>&nbsp;
<BR><I>&gt;&gt; way, and encourages agreeing just for the sake of agreeing to things</I>&nbsp;
<BR><I>&gt;&gt;</I>&nbsp;
<BR><I>&gt;&gt; that don't make the most sense.</I>&nbsp;
<BR>
<BR><I>&gt;sounds like a touch of paranoia to me.</I>&nbsp;
<BR>
<BR>I see nothing paranoid about this position. He seems to be saying
<BR>PAN will work with the various groups even if they don't really
<BR>want to work together.
<BR>
<BR><I>&gt;&gt;</I>&nbsp;
<BR><I>&gt;&gt; I also would argue that currently the cooperation among the national</I>&nbsp;
<BR><I>&gt;&gt;</I>&nbsp;
<BR><I>&gt;&gt; organizations is a good if not better than it's ever been.&nbsp;
I agree</I>&nbsp;
<BR><I>&gt;&gt; it's</I>&nbsp;
<BR><I>&gt;&gt; not perfect, but things are definitely improving, and the Udall bill</I>&nbsp;
<BR><I>&gt;&gt; is</I>&nbsp;
<BR><I>&gt;&gt; one important reason. Further, while greater cooperation among the</I>&nbsp;
<BR>
<BR><I>&gt;&gt; groups and greater commitment of resources by the APDA and NPF would</I>&nbsp;
<BR>
<BR><I>&gt;&gt; certainly improve the chances of passing the Udall bill, I do not</I>&nbsp;
<BR><I>&gt;&gt; think</I>&nbsp;
<BR><I>&gt;&gt; it is accurate to say that the lack of cooperation has been a big</I>&nbsp;
<BR><I>&gt;&gt; obstacle to passage.</I>&nbsp;
<BR>
<BR><I>&gt;Hmnnn! I thought you were trying to say that there was no lack of</I>&nbsp;
<BR><I>&gt;cooperation between the organizations???</I>&nbsp;
<BR>
<BR>No he said cooperation is better than in the past, but not yet perfect.
<BR>
<BR><I>&gt;What was the obstacle, do you know? Could it be that we didn't have</I>&nbsp;
<BR><I>&gt;people who were committed to our cause enough to find a way around
the</I>&nbsp;
<BR><I>&gt;Politics, which will always be there?</I>&nbsp;
<BR>
<BR>The primary obstacle was Newt &amp; company.
<BR>
<BR><I>&gt;&gt; We came very, very close last year, and I think</I>&nbsp;
<BR><I>&gt;&gt; impartial evaluation of the events of last year would show the lack</I>&nbsp;
<BR><I>&gt; &gt;of</I>&nbsp;
<BR><I>&gt;&gt; action on the Udall bill in the House had more to do with election</I>&nbsp;
<BR><I>&gt;&gt; year</I>&nbsp;
<BR><I>&gt;&gt; politics and other political issues beyond the control of the</I>&nbsp;
<BR><I>&gt;&gt; Parkinson's community rather than whatever internal problems we may</I>&nbsp;
<BR><I>&gt;&gt; have</I>&nbsp;
<BR><I>&gt;&gt; been experiencing.</I>&nbsp;
<BR><I>&gt;&gt;</I>&nbsp;
<BR><I>&gt;&gt; I want to take especially strong exception to the remark that "even</I>&nbsp;
<BR><I>&gt;&gt; when</I>&nbsp;
<BR><I>&gt;&gt; (the Udall bill) passes there will be struggles over who gets what</I>&nbsp;
<BR><I>&gt;&gt; money."&nbsp; THAT IS ABSOLUTELY UNTRUE!&nbsp; The Udall bill authorizes</I>&nbsp;
<BR><I>&gt;&gt; additional money be made available to scientists and Parkinson's</I>&nbsp;
<BR><I>&gt;&gt; researchers.&nbsp; All the grant requests will go through NIH's rigorous</I>&nbsp;
<BR><I>&gt;&gt; peer-review process and will be out of the control, or even</I>&nbsp;
<BR><I>&gt;&gt; influence,</I>&nbsp;
<BR><I>&gt;&gt; of any of the Parkinson's organizations.&nbsp; Will some of the money
go</I>&nbsp;
<BR><I>&gt;&gt; to</I>&nbsp;
<BR><I>&gt;&gt; researchers aligned with one national group or another?&nbsp; Of
course,</I>&nbsp;
<BR><I>&gt;&gt; but</I>&nbsp;
<BR><I>&gt;&gt; only after going through the proper NIH grant submission and review</I>&nbsp;
<BR><I>&gt;&gt; process.&nbsp; This is just the type of misinformation that exasperates</I>&nbsp;
<BR><I>&gt;&gt; problems rather than helping solve them.</I>&nbsp;
<BR>
<BR><I>&gt;More bureaucratic bull!</I>&nbsp;
<BR>
<BR>I think Michael is saying once the money is allocated the scientists
<BR>at the NHI will make sure the best scientists in the field will get
<BR>the funds.&nbsp; No bull there.
<BR><I>&gt;</I>&nbsp;
<BR><I>&gt;</I>&nbsp;
<BR><I>&gt;&gt; Please be assured that we too are frustrated by the lack of</I>&nbsp;
<BR><I>&gt;&gt; cooperation,</I>&nbsp;
<BR><I>&gt;&gt; communication and commitment to the Udall bill effort demonstrated</I>&nbsp;
<BR><I>&gt;&gt; within our community.</I>&nbsp;
<BR>
<BR><I>&gt;And well you should be frustrated, you are probably part of the &gt;cause.</I>&nbsp;
<BR>
<BR>OK Bob, so what have you done to get the Bill passed? And how does
<BR>that stack up against PAN'S efforts?
<BR>
<BR><I>&gt;&gt; At the same time, we are committed to not let</I>&nbsp;
<BR><I>&gt;&gt; this matters distract of dissuade us from doing everything we can
to</I>&nbsp;
<BR><I>&gt;&gt;</I>&nbsp;
<BR><I>&gt;&gt; achieve the goals of Udall bill passage and greatly increased</I>&nbsp;
<BR><I>&gt;&gt; research</I>&nbsp;
<BR><I>&gt;&gt; funding for Parkinson's disease -- this year!&nbsp; We greatly appreciate</I>&nbsp;
<BR><I>&gt;&gt; all</I>&nbsp;
<BR><I>&gt;&gt; the hard work by advocates, and will continue to inform, coordinate</I>&nbsp;
<BR><I>&gt;&gt; and</I>&nbsp;
<BR><I>&gt;&gt; support your efforts.</I>&nbsp;
<BR><I>&gt;</I>&nbsp;
<BR><I>&gt;&gt; Remember, Network President Joan Samuelson and other members of the</I>&nbsp;
<BR><I>&gt;&gt; PAN</I>&nbsp;
<BR><I>&gt;&gt; Board of Directors have Parkinson's; they are highly motivated, very</I>&nbsp;
<BR><I>&gt;&gt;</I>&nbsp;
<BR><I>&gt;&gt; skilled and extremely hard working, and have little patience for</I>&nbsp;
<BR><I>&gt;&gt; anything that does not further the cause of finding the most</I>&nbsp;
<BR><I>&gt;&gt; immediate</I>&nbsp;
<BR><I>&gt;&gt; cure for this disease.</I>&nbsp;
<BR><I>&gt;</I>&nbsp;
<BR><I>&gt;&gt; Thank you again for your input and for your desire to achieve our</I>&nbsp;
<BR><I>&gt;&gt; common</I>&nbsp;
<BR><I>&gt;&gt; goal.&nbsp; Please don't ever hesitate to contact us with any questions,</I>&nbsp;
<BR><I>&gt;&gt; comments or requests you may have.</I>&nbsp;
<BR><I>&gt;&gt;</I>&nbsp;
<BR><I>&gt;&gt; Sincerely,</I>&nbsp;
<BR><I>&gt;</I>&nbsp;
<BR><I>&gt;&gt; Michael Claeys</I>&nbsp;
<BR><I>&gt;&gt; Parkinson Action Network</I>&nbsp;
<BR><I>&gt;&gt; Community Outreach Coordinator</I>&nbsp;
<BR><I>&gt;&gt; 800-850-4726</I>&nbsp;
<BR><I>&gt;&gt; 707-544-2363 Fax</I>&nbsp;
<BR><I>&gt;&gt; [log in to unmask]</I>&nbsp;
<BR>
<BR><I>&gt;&nbsp; If you choose to respond to my evaluation of your Bureaucratic
Crap</I>&nbsp;
<BR><I>&gt;please do so privately, the only reason I have responded through the</I>&nbsp;
<BR><I>&gt;list is to encourage others to state their opinions. Frankly with people</I>&nbsp;
<BR><I>&gt;who have your apparent attitude promoting our cause it not hard to</I>&nbsp;
<BR><I>&gt;understand why we have been " put on the back burner"</I>&nbsp;
<BR>
<BR>And with people like you tearing down our cause I'm suprised we
<BR>aren't dragged into a back alley.
<BR>
<BR>Let's all hope PAN keeps up the good work and that together
<BR>we get this bill passed.&nbsp; Bob - I hope you can channel your
<BR>anger into fighting our common enemy.
</BLOCKQUOTE>
&nbsp;&nbsp; Ron, Thanks for your input.
<BR>
<BR>I would first like to say that I hope no one else got the same opinion
as you about my response to Michael Claeys' message regarding Camilla Flinterman.
<BR>I have absolutely no complaint about the hard work and effort put forth
by Joan Samuelson and other s on the PAN staff and in fact I THANK them
and commend them for their hard work and nearly successful efforts and
I feel confident they will achieve our common goal this year. This includes
the efforts of Mike Claey. As far as the cooperation between the various
groups are concerned I believe that you are entitled to your opinion and
I support your right to that opinion, mine just happens to be very different.
<BR>
<BR>As far as trusting where the money goes, if it is funded, I think PAN should
SAY they think it will be well spent so that it will get funded and we
will at least get some of it. however I think it is naive to believe it
won't be subject to the same waste and misappropriations all of the other
moneys our federal government gets their hands on, such as our taxes and
social security, but that's another subject.
<BR>
<BR>Let me say again that my "anger" was directed at the seeming&nbsp; FLAMING
of Mrs. Flinterman rather than spending time and effort on the job at hand
of getting the Udall Bill Passed, and when it is funded I hope your trust
in the money going to the right places and not mine.
<BR>
<BR>I do agree I was probably rude in my statements about Mike Claey probably
being part of the cause of the Udall not being passed in the last session
of congress. I don't blame Michael Claey individually, or PAN or any of
the other of the organizations and I apologize for that comment.&nbsp;
What I should have said is that if there had been more cooperation maybe,
just maybe, we wouldn't be having this discussion And speaking of apologies,
<BR>
<BR>Judging from the lack of list members response to this subject I believe
any further conversation of this thread should be private. I think I have
said about all, probably more than needs to be said
<BR>
<BR>PAN and ALL of your team good luck in your future efforts on our behalf.
I hope I haven't detoured anyone from their course and I do appreciate
your efforts. I feel confident that this will be the year.

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end:vcard




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