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Involve Your Legislators


rdslots

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Are any of you aware of the efforts being taken to inform our legislators, at the local level(s), to take out needs/concerns/pleas for help before Congress?

I would hope all of the associations with dysautonomia concerns would help in the effort(s), as would the three million of us affected with this myriad of disorders.

My husband makes several trips to DC annually, in conjunction with his work, and he says the 'disabled' he sees there command quite a bit of attention.

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There was a post on here just yesturday with a template letter asking people to join effort for awareness of dysautonomia by writing your local congressmen and senators.

The post is now gone so I'm assuming it was removed but I don't know why it would have been.

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the post was removed because it violated the forum rules regarding solicitation -- it's one thing to make a request to be more visible to your legislators, it's another thing to do so on behalf of another organization who's goals may not be in line with those of DINET. In order to post that type of item on the forum, one should first get prior permission from the site's owner, Michelle. As the administrator, not the owner, I do not have the authority to say yes or no--but I did copy and paste the entire thread to Michelle before deleting it. If she feels it's appropriate for posting here, it will be reposted.

Nina

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Yep, the moderators were just doing their job when they deleted the post....things like that have to be cleared by DINET first or Lord knows what would end up on the forum. However, I do know Julie (who runs ADI) and I gave her a call earlier today to discuss her ideas.

Poohbear, since the original post was deleted, I am going to remove the information from your post regarding your willingness to disperse the original information, and I ask that you and all other members respectfully not post on how to obtain information that has been deleted from this forum in the future.

Thanks for your understanding,

Michelle

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Well, I must say I am a bit confused here.

Are we not all in the same boat? This drives me nuts. There are so many constructive ways to inform/educate others about the disorders we find ourselves afflicted with -- and I would think we can all work together. If there is some sort of form letter out there, from any and all dysautonomic organizations, wouldn't we all benefit from it -- regardless of its origination?

OK. My request is simply to get in touch with your own local legislators and carry our needs and concerns as far as you can, which hopefully will be to DC. If people don't know about us, I don't see how they can help us.

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The letter was removed because it specifically requested funding on behalf of another organization--regardless of your opinion, the forum rules state very clearly that one cannot solicit, even if for a good cause, without prior permission. Different groups have different agendas, publicly and privately. We happen to have good relations with nearly all of the other groups that represent dysautonomia, lest you think we don't talk to each other, WE DO. I would never go on one of their forums and ask folks to support DINET, and I expect the same from them.

Also, arguing with the admin, mods or owner about it publicly is ALSO against the forum rules. I am closing this topic -- if you want to start another, that is fine, simply abide by the rules of the forum and it will be fine.

nina

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