when you sign this, if you type a reason why you're signing, what you write goes straight to Dianne Feinstein, Barbara Boxer, Charles Schumer, Kirsten Gillibrand, and Senators Schumer and Gillibrand.
Pretty awesome! Storm this like we did Dr. Phil's comments We made our voice heard there, this is possible with senators as well, and they have the capability to bring change!
Posted by Tincup (Member # 5829) on :
Wintertree,
I am not familiar with the Charge.org petitions and it is possible I am missing something? Hoping you can help.
Is the wording of the actual petition anywhere on the site? I see a plea to ask people to take action, but no real petition, unless I am missing it. ???
What exactly (the wording) is sent to the legislators, if you know?
I also mention the need to be accurate when preparing a document or when our members here are signing onto one. For example, this one states...
"Why- because there is no awareness or advocacy for Lyme Disease and it's associated diseases."
Not only is this statement totally inaccurate, it could be considered by groups and individuals who have given their lives to supporting and advocating for others, and educating the public...
Well, let's just say it is highly unlikely anyone here would know anything about Lyme and TBD's without the educational and awareness efforts made over the last two decades by countless volunteers. Discounting their efforts isn't "cool".
Also, I LOVE advocacy efforts, however, we try to first have a specific goal in mind (in advance) when doing advocacy work. This doesn't appear to be asking for anything more than giving sick people a "right to heal".
Asking Congress members to give us "a right to heal"- well....
Not sure what they are suppose to do or exactly what we want by reading what has been posted, and I'd bet the legislators won't know either.
Example- the Lymedisease.org petition states the problem, then asks for a specific solution (remove the guidelines from the NGC website).
Anyhow, I'm just trying to make some sense of this effort and make it more effective for the community.
Any thoughts you have on this would be appreciated.
Posted by Keebler (Member # 12673) on :
- Tincup, Change.org is generally a great organization. But, I also have the same serious questions as you about THIS.
Wintertree? Have you come and gone so quickly? Hope you'll be back to help us figure this out.
14 posts from April 12 - 16 - most urging action that is not clear. We just want to know what groups are behind these petitions, etc.
I have similar questions as Tincup about wintertree's urging to sign this as this petition could actually be very damaging for those with lyme:
Is there any mechanism by which emails can be sent out to both patients and anyone involved with lyme advocacy nationwide?
--------- We may have other suggestions to help with whatever project you have in mind. Connecting with an established lyme organization may be the best move.
ShazDancer has some great ideas to get you connected - then you won't have to do all the work yourself and can learn the ropes from those who have already blazed some of the paths for us. -
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We made our voice heard there, this is possible with senators as well, and they have the capability to bring change!