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