anne
New Member
Posts: 3
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Post by anne on Aug 14, 2005 0:03:54 GMT -5
I also have thought of advertising- but in a way to get real attention- One idea I had was to have a contest on identifying an organism. There would have to be legalities to it but we could maybe get a radio station , newspaper, to support that end for advertising purposes. I am so willing to stand behind my (our) theory , or should i say facts, that I would put my family out there again before it's to late. We have to many symptoms that are the same- not everyone has the skin issues as severe- but if you look close they are there. I don't spend my time checking everyone out or I would be wacko by now- but I do know they are there and I am tired of my family just dealing with something that they shouldn't have too.
just a silly idea- I am so tired of thinking about this-
My daughter says "I don't have brain fog- I just have blond moments!!"
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linda
New Member
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Post by linda on Aug 14, 2005 0:28:25 GMT -5
I'd said once before that we should sell our "specemins" on ebay. That might draw some attention (and maybe even money!).
Linda
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Post by Pen on Aug 17, 2005 10:17:10 GMT -5
Big brother has gone to great lengths to conceal this epidemic. We have been made to look as though we were DELUSIONAL, so no one would believe us. When the numbers got higher with this disease, they began to LABEL us with different diseases, so the numbers looked less. No one is willing to step up to the plate for fear of being called an UN-American whistle-blower. If I suddenly disappear, you will know why.
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Post by Sue on Aug 17, 2005 10:47:40 GMT -5
Hi Folks I'm Sue, new to this form. This might be a idea, found a up coming conference here in my state of Maryland, close to NIH. Have a look and let me know if you think attending may help us. rarediseases.info.nih.gov/QTRD/index.html
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Post by TonyM on Aug 17, 2005 11:04:10 GMT -5
I mentioned the flyers, all you need to do is if you know someone working at a newspaper stand, ask him to display it free for the public. Stick them on bullitin boards in schools, Universities, in "downtown" areas where there's alot of people, at bus stops with the shelters, busy intersections, maybe send to Health Officials and whatnot, leave them annonymously in bathrooms around the country in restaurants, gas stations, anywhere that is public domain. Just be sneaky in the Library, accidentally leave a flyer on a table and walk away, lol....just a few ideas. As for a walk, I'm 30 miles from Downtown L.A., so I dunno, wonder if I could arrange something, but not sure if there'd be enough people. Any walk would have to have enough people to accomplish I think.
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Post by skytroll on Aug 17, 2005 12:05:10 GMT -5
I deliver newspapers..........HEHEHEHEHEHEHE
skytroll
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