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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 >