Re: Did I Miss Something Here????

From: april degregory (aprilde402@aol.com)
Tue Nov 19 18:32:08 2002


At Sun, 17 Nov 2002, Anthea wrote: >
>I'm trying to make some sense of this question of "who has the right to
>our posted stories on the quilt"...I don't remember seeing a disclosure
>or signing over the rights of my story to any body or COMPANY when I
>posted it....this is way beyond what I thought this site was all
>about...and why isn't Dr Wiseman posting something here to clear up this
>confusion, to make this easier for those trying to make an awareness
>effort, since I guess he OWNS our stories, for what reason DOES he?? Our
>stories can be seen by anyone in the world who accesses this web
>site....nobody OWNS my story!!!! And where is HIS personal support, via
>e-mail or posting here for all the effort and progress we have ALREADY
>made since we started the letters to the editor campaign back in
>September....yes, for all of you who may not be aware of this...there
>has been an on going publicity blitz to the print media all over this
>country AND THE WORLD,of course none of our articles or letters are
>posted on here...BUT this site does OWN our personal story???? There is
>something wrong with this picture...are our stories only good for the
>statistical fact that it shows 600 people are sufferering from ARD?? And
>who is this benefiting and any $$ sent here, where is that going...since
>OUR stories belong to somebody or some company..I sure would like to
>know that too !!!! Feeling used is not for me..I have enough pain right
>from this disease to try and figure out this game....I and many others
>have been busting our butts to get this media campaign running hard,
>have spent countless hours doing it..have posted all about it here in
>the past 2 months..I HAVE NOT RECEIVED ONE PERSONAL E-MAIL FROM DR
>WISEMAN ABOUT THIS..I WAS INSTRUMENTAL IN GETTING A HUGE ARTICLE WRITTEN
>IN THE CLOUMBUS DISPATCH [OHIO] A FULL PAGE ONE, HIGHLIGHTENING THE
>PLIGHT OF A FELLOW SUFFERER, BROKENWING....DR. WISEMAN WAS QUOTED IN
>THIS ARTICLE...[GOOD P.R. FOR HIM]....THINKING, OF COURSE THAT HE WOULD
>BE INTERESTED IN THIS ARTICLE OR WHAT THE POSITIVE RESULTS WERE FROM IT,
>OR A KIND WORD OF CONCERN FOR BROKENWING WHO AT THAT TIME WAS LITERALLY
>IN TOTAL DISPAIR....NOTHING, HEARD NOTHING..LET'S SEE, HE IS SUPPOSE TO
>BE HELPING US BUT HE ONLY OWNS OUR STORIES......OK..ALL DONE...MY STORY
>WILL BE HISTORY HERE...MY GOAL IN LIFE AT THIS POINT IS TO MAKE A
>DIFFERENCE, IN A POSITIVE WAY, WITH POSITIVE SUPPORT AND GUIDANCE..AND
>NO ONE WILL CONTROL MY STORY OF MY OWN PERSONAL SUFFERING....AND TO THE
>WONDERFUL FRIENDS I HAVE MADE HERE...I WON'T BE FAR AWAY, JUST AT
>ANOTHER PLACE WHERE THERE IS SUPPORT AND DIRECTION..ANTHEA

--
anthea,
Do you have any information about clinical trials for spraygel at the cleveland clinic.

I know you dont know me , Im new to the site.....but not to ARD.......I thought somewhere in the archives cleveland was mentioned. would appreciate any info you might have Thanks, April


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