Dear Hilary 'n Ivan....

I've got THEE perfect world-wide-attention-grabber
that'll make all of us sweet-treat and ice-cream guzzling
Parkies make it to the front page of all the major
newspapers and also will tickle the fancy of all the
big-name TV anchors.  Parkinson's will become a
household word if we do THIS!!   Ready?  Here's
what we gotta do:

To make Parkinson's and those of us who live
with this %#@^& disease VISIBLE and FAMOUS
(which theoretically would also bring in the much
needed research bucks so a cure and/or treatment
may be found) , errrrrr.... I digress... is to hold a
 world-wide ICE CREAM EAT-A-THON!

I can see the headlines now:  "Millions of Parkinson's
sufferers and their families and friends vow to
non-stop eat ice cream till a CURE to the disease
is found." (Choice of flavors left up to the eater) <smile>

Heck.... we can get Ben and Jerry to be our spokespersons!

Barb Mallut (who absolutely LOVES ice cream!)
[log in to unmask]

-----Original Message-----
From: Hilary Blue <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Monday, April 19, 1999 1:07 AM
Subject: Re: The Tutu-PD story: Are the MAJOR MEDIA indifferent?


>I recently met somebody who works for one of the advocacy groups
in Washington
>DC, where her job is (believe it or not_) to keep things OUT OF
the news
>media.  Well, as publicity is her field, I asked her what we were
doing wrong.
>First of all, she confessed she had never heard of Archbishop
Tutu and had no
>idea of who he was or what he was famous for - which may be
indicative of why
>we elicited no response (!) but more importantly, she said we
were not doing
>anything wrong , we were on the right track, we just HADNT DONE
ENOUGH!  That
>we should have frequent press releases., for every little event
and occurrence
>relating to PD, so that it is constantly in the eye of the news
media, And
>that we should get some celebrity - she mentioned Michael J  Fox
( him she had
>heard of) to speak out on our behalf. And she assumed we had a
full time press
>officer - does any of the PD organisations have a press officer
on its exec?
>Hilary Blue
>
>*****************************************************************
*****
>
>Ivan M Suzman wrote:
>>
>> ^^^^^^  WARM GREETINGS  FROM  ^^^^^^^^^^^^  :-)
>>  Ivan Suzman        49/39/36       [log in to unmask]   :-)
>>  Portland, Maine    land of lighthouses         39  deg. F
:-)
>>
******************************************************************
**
>>   I am DISGUSTED that the Tutu-PD story has been ignored
>> by the major media!  But I am NOT surprised.
>>
>>   As an anthropologist, I wish to record the observation here
>> that, as far as I am aware, we listmembers contacted more than
1000
>> media worldwide.  Killings in Yugoslavia get banner headlines,
>> but as far as I am aware, NO phone calls, ZERO, have come to
>> either Archbishop Tutu's offices, or to my house, to cover
>> the story of his powerful and wonderful response to our
>> pleas for his support. I believe Barb Patterson had the
>> only radio interview, but it brushed aside the Tutu story.
>>
>>   We simply are NOT on the agenda of the media,
>> unless we are convenient "filler" material.  I wonder
>> if we could change that with a press conference,
>>  BLASTING the major media. Or we send a delegation
>> in wheelchairs to block the doors of the NIH Director.
>>
>> It was actions like this that made AIDS an "agenda
>> item."  Is PROTEST, rather than persuasiveness, the
>> only way to get the attention we deserve?
>>
>> I personally believe that we can, and we
>> should, add the element of a protest, an outcry,
>> at this time.
>>
>>      Locally, in Maine, a tiny black-owned and edited
>> bimonthly, The Bridge, right here in Portland, IS about
>> to print the Tutu-PD story.  But ALL of the TV and
>> radio and newspapers have ignored it.
>>
>>       The African-American editor of the Bridge hopes to
publish
>>  by the end of this month. We served as two of Portland's
>> three co-chairpersons on the Martin Luther King
>> Holiday Committee in 1986.
>>
>>       There are  so many obstacles for PWP's to gain
>> access to the media.  I would have thought a Nobel
>> Laureate and WORLD figure like Archbishop Tutu
>> would be interviewed, even if little Ivan doesn't seem
>> to matter to them.
>>
>>       And where have Mr. Fox and his publicity gotten
>> us?  When Robin Elliot relays that NOBODY from
>> our community is on the NIH council, what IS the
>> message we should derive?
>>
>>      For me, now starting to deteriorate, in my 14th
>> year of Young Onset PD, or YOPD + something
>> unknown, I can only say that it is my near collapse
>> last Friday and my continuing vulnerability that push
>> me to say that,
>>
>>    although we have come a long, long, way,
>> there are  still HUGE obstacles in our paths, and
>> only the brave and spiritually strong will
>> help us along to reach our "mountaintop,"
>> that is, the CURE for this wretched disease!
>>
>> Ivan Suzman
>> Portland, Maine
>