I am writing to ask you to sign a petition that will help me and many others across the country who have Lyme disease. Please take a minute to sign it and pass this note along to everyone you know. We hope to have 50,000 signatures.
posted
As a result of my own skepticism, and so many petitions regarding Lyme issues being available to sign during the past few months, I have done some checking and have found that a petition that you sign on a website that is set up by an organization is very secure. It is much different than one that is forwarded by e-mail. Here is a statement that I received from Pat Smith, President, Lyme Disease Association:
Names and addresses will NOT appear on the internet but will be printed out with the petition when it is ready to be presented to the appropriate entity. LDA never sells names or shares them with marketers. The petition will be used in an effort to advance our cause at the appropriate time and will be kept private until that time. Remember, like you, LDA is all patients and families of patients.
It might help to mention this in a personal note when you contact friends and family members asking them to sign.
Posts: 119 | From Southwest Florida | Registered: Sep 2005
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-------------------- well i know a disease that these doctors can't treat, you contract on the day you accept all you see... Posts: 97 | From nor cal | Registered: Oct 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Bless your heart Nancy in sunny Florida.
I am in the midst of a "computer change". Seems the young ones in my family don't think the old ones should be doing things THEIR old way.. you know.. how they have been doing it for years and are happy with? And to bring me into the most recent decade.. they have come to overhaul EVERYTHING!!!!
Ahhhhhhhhhhhhhhhhhhhhhhh!!!!!!!!!!
Ya know.. I think I like them better when they come to visit and work outside with the chain saws! Leave me and my computer ALONE! ~smile~
Anyhow.. YES!
I couldn't find the info you just posted.. and I've been looking lookin lookin...
I'll repeat it here for Dilly .. who perhaps missed it in the other posts here??
"Names and addresses will NOT appear on the internet but will be printed out with the petition when it is ready to be presented to the appropriate entity. LDA never sells names or shares them with marketers. The petition will be used in an effort to advance our cause at the appropriate time and will be kept private until that time. Remember, like you, LDA is all patients and families of patients."
Now.. for folks who don't want their names on it ANYWAY.. even after that... unfortunately...
My only response at this point would be..
The risk of putting your name on a petition seems less harmful to me than hundreds of thousands of people left with no doctors.. and no medicines... to treat a potentially life-threating illness.
Even I am going to have to suck it up and do it.. like it or not... sorry.
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Hi TinCup-
Not sure what you thought I missed? I signed the petition- I was number 27, I think.
And I'm campaigning to have many others sign it as well.
Maybe you're meaning about the LDA not saying where the petition will be sent and/or the specific purpose of the petition?
Sure I saw what Pat Smith wrote about not stating that info up front. I've written to the LDA offering lots of support, but also suggesting that particular decision be reconsidered, certainly if there is any desire to reach outside of the lyme community for support.
Can't see a downside to just saying the thing- (and actually, have never heard of a petition that didn't) and I see a lot of upside to bringing more folks on board.
Dilly
[ 30. October 2006, 09:06 PM: Message edited by: sometimesdilly ]
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Done Posts: 7052 | From Colorado | Registered: Mar 2003
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Dilly said..
"I've written to the LDA offering lots of support, but also saying I think that particular decision is a mistake, at least if there is any desire to reach outside of the lyme community for support."
HA! SORRY... I gotta laugh at this point.
Silly dilly dear.. you seem to have soooooooooo many complaints about the way folks are doing things. Are you just not feeling well? If that is the case.. perhaps you can do what I tell others to do.. which is to wait until you feel better before taking on a big project. That way you can do it well and spend time working on it in a positive manner.. and have positive outcomes.
After all.. you MUST take care of yourself first and foremost.. especially if you want to be useful to the Lyme community at some later time.
And just so you know...
We ARE trying our best. We aren't perfect.. we are all over-worked.. and we are tired.. and we are sick. We are fighting for our lives... and yours.. in spite of the pain. So do tell...
Is there anything anyone is doing that DOES make you happy? ANYTHING you can agree with? ANY project you can help with that would please you? We'd sure love to hear about it!
As you probably know... it would certainly be more helpful to all of us if you'd provide constructive critism rather than just disagreeing with or condeming the work these folks behind the scenes are trying to do.
We are all ears! But PLEASE... DO wait if you aren't feeling up to helping. We do understand. We've all been there.
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Dear TinCup-
The "we" who are sick and in serious pain and fighting for our lives and tired and not perfect and all the rest and yet still working hard for the lyme community NOW, not at some future date includes me, and you know it.
The smiley faces in your message notwithstanding, that was a pretty nasty, sarcastic post. I can't imagine why you would find it appropriate.
Putting that aside, I don't feel any need to defend my suggestion to the LDA, or any other suggestions I've made along the way--they've been constructive.
And they've always been in the context of working together towards the same goal, and I'm going to wake up tomorrow and continue to work together towards the same goal, and then the day after that too.
If you're gonna get cranky, go find someone who isn't working her butt off everyday for the community, TinCup.
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
It would be helpful if the privacy notice were posted on the petition site. It will give it more credibility, even if we are all including it in our requests for signatures.
I will email Pat, but, perhaps someone else who is in more frequent contact could suggest it as well.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
TC darlin' - doing a good job! Keeping it simple for us simple folk! Thank you.
Now -- if you could take some time out of your busy day to compose a letter for me that I could send to my friends who I don't really like anymore...that would be swell.
SEE - there's tons of people that are my "friends" but not really my friends because when I got sick they disappeared. I've been waiting 2+ years for a sweet email, a card, phone call, or maybe even a tuna casserole from them. NADA.
So - if there's any of you out there in the same boat, I'm thinking we can use this petition as a way to tell them of our plight (which they have IGNORED because they're too busy living the healthy good life.....) but in asking them to help, we must certainly tell them of the extent of our suffering in order to properly motivate them to sign...
I'm just having trouble writing my letter to them without coming across a malingering, whiny person. (I know this shocks many of you....)
So TC - do tell darlin' - what's your best advice on how to approach pseudo-friends for their help with this? I can't get past, "Dear Selfish, Self-Centered @#$%*&$%# Who Couldn't Be Bothered to Care about All My Suffering..." Do you think that's a bad start?
Keep up the good work....gotta get back to my sweet letter writing!
Hugs &
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yo ho TX ho!
Me tinks that is an excellent beginning for a letter. Not as strong as I would put it.. but a grand start. You'll have to try harder to be as ruthless as I am.
By the way.. tis late.. but I believe I owe you.. and about 457 others... an email? Lost electric.. then had computer overhauled.. and am running way behind ..especially since returning from our trip to, to, to... where were we? Oh yeah.. the conferences in PA! Duh...
So do know I will catch back up with you soon to advise you on rotten letter writing and other concerns you had... and I will hit the hay trying to come up with a good nasty note for you to send to those idiots when you share this petition. I'll dream on exactly how to do it.. JUST for you... otay?
And what's that about a tuna casserole?
Now... how many times have I got to tell you...
If you aren't going to get anything from someone.. at the very least.. whine about not getting a lobster... or a diamond ring... or something more ... uh ... uh... luxurious.
Whining about having no tuna casserole is like.. well... well.. having a day where the only good thing that happens to you is the cat doesn't puke on your carpet.
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