^^^^^^GREETINGS  FROM^^^^^^^^^^
Ivan Suzman  47/10   [log in to unmask]
Portland, Maine   land of lighthouses  55   deg. F warm wind
***********************************************************

On Thu, 11 Sep 1997 00:17:46 -0400 SJS-OnTheNet <[log in to unmask]>
writes:
>Dear Ivan --
>
>Sorry that this problem with NPF is getting to you so hard.....
>However, if you want to pursue it, my suggestion again is: consult a
>good
>lawyer and see if you do still have a fightable case.

Dear SJS and listfriends,

    THank you for continuing to connect to me.

    I can't thank you all enough for trying to help me "get over" the
HORRIBLE
and expensive experience I had to endure at the National Parkinson's
Foundation in Miami, Florida.

    What I feel sad and unresolved about is that we are 1600  good,
caring people. We try out our ideas among each other.  We weigh the pros
and the cons , and we listen to each other. Yet,  when any one of us is
treated UNFAIRLY, the question arises:

     How powerful are we, not  only as loving advisors, but as a
political community??

    It is  apparent  to me that ALL seven listpeople agree that I may
fight the NPF if I can, but I MUST try to accept what happened and let go
of my anger.

      ALL of us, so BUSY fighting Parkinson's , really have no "PWP's
advocate" out there to go to the NPF, and say,

   "One of our members has been wronged.  We ALL expect the NPF to
address this situation NOW,  so that justice is done for ALL of us."

     So we lose our power!  It's almost like fighting for the Udall Bill.
 We struggle and struggle and there's STILL no Udall LAW on the books.
What I mean is that we have no "Community Representative" to help us when
we are truly aggrieved.  OUR POLITICAL POWER IS INSUFFICIENT.

     Then the work falls back on us INDIVIDUALLY! Honestly, I am too
exhausted from 10 years of Young Onset Parkinson's to spend those rare
"good hours" being David fighting Goliath.

     So, whether it's the NPF, Newt GIngrich, or the FDA, I am going to
SCREAM LOUDLY with my now-softening Parkinsonian vocal cords.  But at
some point, your inner voice says:

     "We as a 1600-member community are not ORGANIZED nor CONNECTED
adequately to help listmembers confront "the system".

     I just wish there was SOMEONE IN MIAMI--a lawyer that one of us
knows--who would go to bat for me(and really, for all of US)--rather than
my having to search on my own, like I was on a needle-in-a-haystack hunt
for someone to represent not just me, but again, ALL OF US.

      Someone like Mr. Muhammad Ali comes to mind -- one of my greatest
heroes - especially because of both his spirit of resistance, and his
great capacity to love. What an incredible role model!!

      I guess, my answer to all of you who are trying to empathize and
help me , is that the NPF should get phone calls in Miami and  telegrams
and letters  and should not receive dollars, and it should be
challenged-IN AN IDEAL WORLD-by people who have the strength to do so.  I
can't and won't ask ANY of you to actually do that--you've all got ENOUGH
headaches without this, too.

       Thank you all for your prayers, suggestions, and thoughts.  I wish
we were more of a COMMUNITY. Our "cybercommunity" is at least far, far
better than nothing at all.

        I am going into prayer over this tragedy. God is testing me.

        Please call if you feel like talking to me directly.

        Ivan Suzman  (47/10)
        (207) 797 - 8488
        9 Range Street
        Portland, Maine 04103

         [log in to unmask]

         The National  Parkinson's Foundation, Inc. is (305) 547 - 6666
.