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I tried to ask, unsuccessfully, if any of you are/were aware of any efforts to get our concerns, as sufferers of dysautonomias, before members of Congress. Please understand that I am not soliciting anything here, other than information of how to better organize ourselves, under an 'umbrella of fellow autonomic disorder sufferers,' and get information out to others.

I really don't think it much matters what we call ourselves, or what organizations we say we represent, but if we start by writing our own Congressmen, even if it is only as individuals, can it not make a difference?

Sign me, Clueless Here

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Guest dionna

i don't know if any other efforts are being presented but... i would say that a lot of us on here are really sick at this point... which is why we are here... for support! some of us may just be too tired to try to tackle it. it requires a good bit to actually get congress or who ever to notice you. i was in the military. i was in DC. i saw all sorts of high officials and things like that all the time. the president... president of the united states, the vice president of the united states. mrs. cheney even autographed a book for me! i met a lot of senators and congressmen from many states. none of them cared about me passing out. they just wished me luck and turned their backs. i was in the hospital that all the injured form iraq go to that is on the east coast. that is why they came up there. to visit the injured marines. everyday people came in. even iraq's vice president and his wife came up there. i met them at the door. i agree with you though that more should be done and that they should help us. some of us here are just too tired. we can't drive, we don't have fax machines, and a lot of the ones on here are getting the run around every where we go. our minds are gone. when i go back to DC in two weeks i will go to the hospital and fax something. i'm just trying to let you know that i don't think anyone is ignoring you. and i believe that everyone here agrees that more should be done. i;m just trying to say that it just may not be possible for some to get out there and -fight-. and i wanted to let you know that i am going to try to.

dionna B)

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That's a good idea. I've written my congress people about other issues, I'll have to send one about Dysautonomia.

Since the Anthrax scare, email is preferred over snail mail. Snail mail gets held up forever in security checks.

Form letters are fine. I think they get counted and logged to keep track of opinions.

Original letters are given more consideration because they take more time to write. Most Congress people will respond to an original letter. Senator Shelby always writes back with a relevent response, even though we agree on nothing. Sessions and Bonner never bother to acknowlege my letters.

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I would be more then willing to help but I am horrible at writing and really would have no idea what to write. If someone could maybe get a form letter together, I would be more then happy to either handwrite and send out or print and send out.

Just let me know what I can do and I will do it! haydenfamily@columbus.rr.com


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