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!
-------------------- No action, no change. Limited action, limited change. Lots of action - Change occurs. - Catherine Pulsifer
When you jump for joy, beware that no one moves the ground from beneath your feet. - Stanislaw Lec Posts: 28 | From Earth | Registered: Apr 2012
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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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!
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