posted
The petition to support the "Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2005.'' (S.1479, H.R. 3427) is now available at www.petitiononline.com/lyme
Thanks cave76 for your review and input.
BettyG - I think all but one of your concerns were addressed. I can delete any signatures with inappropriate comments. I didn't put all of the current congressional supporters on since the petition was on the long side already and also I cannot change it to add more names when we get more supporters!! Maybe we can track that separately.
-------------------- Lynne
"Never doubt that a small group of thoughtful, concerned citizens can change the world. Indeed, it is the only thing that ever has." - Margaret Mead Posts: 63 | From USA | Registered: Jul 2006
| IP: Logged |
bettyg
Unregistered
posted
Lynne, I signed as no. 3. Thank you for doing this and I'll forward the link to lymies on my group list.
2 comments: I did see one mistake: there are 49 states reporting lyme disease.
Is there any way the petition could be ARIAL vs. times new roman since there are many of us neuro lymies, like me, who can't read TNR since it runs all the words together making it hard to comprehend? thank you
Yes, we could track those signing on THIS post so we all know without going other places! Great idea Lynne. Bettyg
IP: Logged |
Thanks for your comments. You're right about the 49 states, not 48. That was a typo on my part. Unfortunately, I am not allowed to modify the petition once it is up.
Also, I am afraid I can't change the font. The good thing about using a site like this is that it is very easy to use. The bad thing is that you can't always do everything you want. The font is changed to their standard when you enter the petition. I did try to make lots of paragraphs so helpfully that helps.
Thanks, Lynne
-------------------- Lynne
"Never doubt that a small group of thoughtful, concerned citizens can change the world. Indeed, it is the only thing that ever has." - Margaret Mead Posts: 63 | From USA | Registered: Jul 2006
| IP: Logged |
bettyg
Unregistered
posted
Lynne, thanks for the update and addressing my concerns. Yes, thanks for breaking up the paragraphs for easier reading. Bettyg
IP: Logged |
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Just signed this.
good work
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
| IP: Logged |
bettyg
Unregistered
posted
I just posted this in activism too.
To all reading this: please take 5 minutes and sign the below online petition on the 2 bills in USA's CONGRESS asking for a special LYME/TICK-BORNE DISEASE ``TASK FORCE'' be created; NO $$ for funding; it's strictly ALL-VOLUNTEERS on this task force we are asking for !
If you go to www.lymenet.org `s ACTIVISM section, look for posts that are in Washington, DC about bills S 1479 and HR 3427 .
There are links there where you can read the full bill as submitted. Please go there and check if YOUR STATE'S senators and house of rep have CO-SPONSORED each of the above stated bill nos .
"Lyme and Other Tick-Borne Disease" hosted on the web by our free online petition service, at:
When you are in there registering yourself, please ask your family members and close friends/relatives if they would approve your signing online their name, state, city is optional, to the petition .
You will show YOUR email address, and confirmations will be sent to YOUR email address confirming you signed the petition. There is nothing else involved...no money, etc.
If you have any questions, please send me a PM, private message, and I'll get back to you daily about this project!
I'll teach you how you can streamline this if you are doing multiple family entries with majority of the same info WITHOUT RETYPING it all! Bettyg is my nickname on lymenet .
The petition will then be sent to congress to the committee who is holding it up now!
It's been a long time in getting this far folks, please help us SUCCEED in getting lyme/tick-borne diseases discussed and acted upon in congress! THANK YOU ALL! Bettyg
IP: Logged |
posted
I signed, and will try to get some others to sign it too.
Posts: 106 | From USA | Registered: Aug 2004
| IP: Logged |
bettyg
Unregistered
posted
was 210 1/2 half ago..
Lynne, would you check with the webmaster there to find out the MAXIMUM no. of names PER EMAIL ADDRESS are allowed?
I was involved in something similar to this 2 years ago for actor/comedian/dancer/singer DICK VAN DYKE on trying to get him nominated for the KENNEDY CENTER HONORS awards.
They had a limit; can't remember how many. I alone collected 500 names; went to every event I could and had people sign up.
Then I entered their names until I maxed out; scanned my list remaining and sent it to others to type in until they maxed out. Kept going this way until all signatures were added.
I think we ended up with only 1500 name/line entries internationally! Betty
IP: Logged |
MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
Betty....who shares e-mail?
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
| IP: Logged |
posted
I signed the petition It's now 226
Posts: 628 | From the south | Registered: Dec 2005
| IP: Logged |
bettyg
Unregistered
posted
quote:Originally posted by MagicAcorn:
Betty....who shares e-mail?
Acorn, is this what you are referring to? If not, please be more specific; I don't understand your comment please.
"You will show YOUR email address, and confirmations will be sent to YOUR email address confirming you signed the petition. There is nothing else involved...no money, etc."
Example, I signed my own then went back later and I ADDED hubby, 2 step-kids/hubby for a count of 5 people.
They were all entered under MY email address. So the petition people sent my home email a confirmation for EACH of the 5 names I entered in case someone was not legitimate on APPROVING that their name be added to the petition.
Hope this answers your question. Bettyg
IP: Logged |
MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
Betty,
My thoughts are that more than one name per e-mail address probably would effect the validity of the petition.....not many people share an e-mail addy.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
| IP: Logged |
bettyg
Unregistered
posted
Acorn, it also shows ALL families do NOT have internet, nor access to it, and do NOT even know how to run one if they had it.
Originally posted by lesley1954:
Hi Cave and Betty,
A better and relatively easy alternative would be making a form letter available on lymenet that people could complete and email back to their Representative and Senators.
I would be willing to help write such a letter, if that would be helpful. I'm also happy to continue throwing in my two cents on lobbying/advocacy tactics -- solicited or not. Lesley -------------------------------
Lesley, I happily accept your kind offer to write the FORM letter for us to use writing our senators/reps! Thank you for your willingness to volunteer your background expertise on this matter and future ones.
I also want you to continue throwing out your 2 cents always! That's what I do daily; sometimes it's well received; other times not, but the compliments I get from the receptive folks are worth more than the downers! So keep them coming Lesley! God bless you for sharing w/us.
ADDING: I would love to see your FORM LETTER added to the 3 posts about the 50 state's contact info for:
FEDERAL: senators & house of reps STATE: SENATORS & HOUSE OF REPS
Then ALL the info on form letter & ALL EMAILS, etc. would be there TOGETHER as a KIT PACKAGE available for the spur of the moment mailings!
bettyg Frequent Contributor Member # 6147 posted 01-09-2006 02:09 AM ------------------------------
now 288; 1 of my names did NOT GET ENTERED; so I added it now. So folks, look at the FINISHED product when you are done typing so ALL INDIVIDUAL NAMES appear on the list ok! THANKS! Bettyg
IP: Logged |
Carol B
Unregistered
posted
I just signed- #291 I think. What if you don't remember if you signed already? I wish they would do alphabetical or by state-I could see this thread next week and not remember if I signed or not! Carol
IP: Logged |
MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
Betty - Acorn, it also shows ALL families do NOT have internet, nor access to it, and do NOT even know how to run one if they had it. I don't buy that answer Betty...
Betty also said: They were all entered under MY email address. So the petition people sent my home email a confirmation for EACH of the 5 names I entered in case someone was not legitimate on APPROVING that their name be added to the petition. In case someone was not legitimate? Betty that doesn't even make sense.
It should be one signature per e-mail address so the validity is not compromised.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
| IP: Logged |
bettyg
Unregistered
posted
Acorn, this is where we agree to disagree on this subject. Bettyg
IP: Logged |
bettyg
Unregistered
posted
was 430 when I came in tonight..Bettyg
IP: Logged |
bettyg
Unregistered
posted
617 names now; 1250 pm, 9-5
I'm pasting this to general & medical too!
CONGRATS CAROL B; such a touching story you wrote there! Way to go; WELL DONE MY LYME FRIEND!
LYNNE, ANN, & CAVE,
Here's a thought of instead of making paper copies of this entire petition, that we EMAIL our letters to our FEDERAL senators/reps and include the onlinepetition link!
This would be manageable to look at and work with vs. stacks of paper so high! Bettyg
IP: Logged |
bettyg
Unregistered
posted
694 name right before midnight 9-5-06...BG
IP: Logged |
bettyg
Unregistered
posted
817 at 1145 pm, 9-6;
1 more Iowan for 13 now; we're slow but moving along...hope more will join in! Bettyg
IP: Logged |
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I posted the link on a few of the lyme boards i go to. They were not aware of it. So far i got 7 people to sign since this afternoon :-)
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
| IP: Logged |
bettyg
Unregistered
posted
1206 signatures; the remarks are so touching! BG
Way to go LYNNE for initiating this petition on behalf of ALL LYME PATIENTS IN THE USA!
IP: Logged |
bettyg
Unregistered
posted
1 3 4 7 new total 1152 pm, 9-10-06
IP: Logged |
bettyg
Unregistered
posted
I'm copying to ALL of your posts about the lyme petition.
1 5 1 9 on 9-11-06, 1155 pm
the 3 same posts are still there now..fyi only Bettyg
When posting this, I came across 1 of my posts from 2 weeks ago after this started with 300 sgnd up!
2,000 in 2 weeks! That's progress! KEEP IT GOING UP UP UP!
I noticed one 5th grader signed & wrote a touching story.
How about MORE KIDS WITH LYME SIGNING?
Wonder if the LYME PETITION could be posted at Dr. Jones' office for lyme kids/parents to see there if they do NOT HAVE INTERNET Bettyg
IP: Logged |
bettyg
Unregistered
posted
2 2 8 2, 9=16 at midnight! Bettyg
Lynn, noticed one of our newbies ended up with a double post...fyi only.
IP: Logged |
bettyg
Unregistered
posted
2 3 4 3 on 9-18 at 142 am Bettyg
IP: Logged |
bettyg
Unregistered
posted
2 4 7 6
one lyme patient stated they spent $100,000 out of pocket for IV treatment last year; many touching stories being told here; sign up please! Bettyg
IP: Logged |
-------------------- We have only this moment, sparkling like a star in our hand... and melting like a snowflake. Let us use it before it is too late. Posts: 221 | From the hills | Registered: Mar 2006
| IP: Logged |
bettyg
Unregistered
posted
2 7 6 7 .... finally other IOWANS have signed up!
Many impassioned comments on here now! Bettyg
IP: Logged |
bettyg
Unregistered
posted
2 8 9 0 ... yes, look at the IOWANS finally take off! HIP HIP HORRAY. I believe we now have only between 33-35 IOWANS. Bettyg
posted
2 9 2 8 with more Iowans signing. Bettyg --------------------------------------------------------------------------------
IP: Logged |
bettyg
Unregistered
posted
whoopie! 3 1 7 4;
250 more than the last time I visited late Friday night! Great increae of NC, & other states really getting involved.
Cave & Ann, in the last 50 names, one poster wants help and left her email address to send answers too! Can either of you help her? Bettyg thanks!
IP: Logged |
bettyg
Unregistered
posted
3 3 4 0, up 166 folks since earlier today when I checked in! WHOOPIE!
Lynne, great job in stating & keeping this rollingwith the help of Ann-Ohio's CHALLENGE which Cave, Calif. happily accepted. Bettyg
IP: Logged |
bettyg
Unregistered
posted
3 4 6 9 and look at all the New Jersey folks signing up!
With 100-150 daily, we'll be up to 4000 this weekend! YIPPEE! Give it going and going! Bettyg
IP: Logged |
bettyg
Unregistered
posted
3 6 1 1 ... another 142 since my last visit. Bettyg
Lynne, good seeing you post and your thoughts about things. You mentioned books, and I don't remember if I told you, Ann, Cave, and others about this or not.
PJ Langhoff wrote THE SINGING FOREST, a journey of lyme disease, about her personal trying/crying story to date.
It tells about her 2 kids with UNTREATED lyme, her ex-husband getting custody of them since she was too sick, and his constantly taking her to court over everything.
We talked privately, and I told her about Iowa's 2 senators were CHAIRS of:
Tom Harkin, chair of HEALTH, etc. committee
Chuck Grassley, chair of FINANCE committee
So she wrote a long letter to Tom Harkin and included one of her books for him to read all about chronic lyme disease! This was around July 4th.
Haven't heard from her IF Tom/office rep sent her a thank you letter for the book ^ letter or not.
This is an excellent way of bringing lyme awareness to our senators/representatives.
I agree with Lynne; we all have time to EMAIL our senators.
Go to activism to TINCUPS CONTACT STATE INFO about the 50 states. See if your state is done or not with emails ^ mailing addresses.
Many folks have worked very hard and many hours given to this project. So please use it when writing your senators/reps ok! Thank you all. Bettyg
Very touching comments by NC Dr's J! WOW NC really had the numbers tonight on here! Go NC! Bettyg
To all, I misspoke and edited out my wrong comments!
quote: Originally posted by cave76:
Not betty here, but about your question on the passage of HR bill.
I haven't heard that either. I'll dig around a bit and wait for betty's clarification before saying anything.
She might have mis-spoke, meaning that the bill was passed out of Committee and into Subcommittee. *************************************************
And unless the Subcommittee did actually pass it, it seems to be dead in the water, since there's only a month left in this session. --------------------------------------
Cave, you are absolutely right! I mis-spoke! I heard from Iowa's Rep. Leonard Boswell, who IS a co-sponsor of the HR 3479. I knew it passed out of committee, and thought all was done. I'm SORRY for my error. I'll go up above ^ delete that comment.
I did online ^ found what Ann did plus a summary for each of the bills was included too:
H.R.3427
Title: To provide for the expansion of Federal efforts concerning the prevention, education, treatment, and research activities related to Lyme and other tick-borne diseases, including the establishment of a Tick-Borne Diseases Advisory Committee.
Sponsor: Rep Smith, Christopher H. [NJ-4] (introduced 7/26/2005) Cosponsors (81)
Related Bills: S.1479
Latest Major Action: 8/5/2005 Referred to House subcommittee. Status: Referred to the Subcommittee on Health . ------------------------------ SUMMARY AS OF: 7/26/2005--Introduced.
Lyme and Tick-borne Disease Prevention, Education, and Research Act of 2005 - Requires the Secretary of Health and Human Services to establish the Tick-Borne Diseases Advisory Committee. Requires the Committee to advise the Secretary and the Assistant Secretary for Health regarding how officials can:
(1) ensure interagency coordination and communication and minimize overlap regarding efforts to address tick-borne diseases;
(2) identify opportunities to coordinate efforts with other federal agencies and private organizations addressing such diseases;
(3) ensure interagency coordination and communication with constituency groups;
(4) ensure that a broad spectrum of scientific viewpoints is represented in public heath policy decisions and that information disseminated to the public and physicians is balanced; and
(5) advise relevant federal agencies on priorities related to Lyme and tick-borne diseases.
Requires the Secretary, acting through the appropriate federal officials, to provide for the coordination of all federal programs and activities related to Lyme and other tick-borne diseases, including:
(1) developing sensitive and accurate diagnostic tools and tests,
(2) improving the efficient utilization of diagnostic testing currently available;
(3) accurately determining the prevalence of such diseases;
(4) evaluating the feasibility of creating a national uniform reporting system;
(5) providing and promoting access to a clearinghouse of information on such diseases;
(6) increasing public education related to such diseases;
(7) creating a physician education program;
(8) establishing epidemiological research objectives to determine the long term course of illness for Lyme disease; and
(9) determining the effectiveness of different treatment modalities by establishing treatment outcome objectives
Again, my apologies; I messed up. Bettyg
IP: Logged |
bettyg
Unregistered
posted
3 7 9 3 only 4 more than 4 hrs. ago; slow night!
Interesting comment about Plum Island being the cause...Bettyg
IP: Logged |
bettyg
Unregistered
posted
quote:Originally posted by Ann-OH:
Betty,dear, Go to Bed! You need your rest! Who brought up Plum Island???
The Plum Island Conspiracy Theory has been around for years and years. That's my story and I am sticking to it! Ann - OH
Ann, it was no. 3713 that mentioned it lately; someone else did at the beginning of the petition.
Yes, I went to bed and slept for a long time, plus a long afternoon nap! big uffda.
Tonight, total is 3 8 3 3 only 40 more than when I was on here last night; folks were taking the weekend off. Bettyg
IP: Logged |
bettyg
Unregistered
posted
3 9 5 7 and more Iowans have joined our cause.
Happy to read of someone's husband's co-workers ALL signing this! WHOOOPIE!
Get more church groups, PTA, and whatever org you belong too. Bettyg
IP: Logged |
bettyg
Unregistered
posted
4 1 6 9 SAME NUMBER AS CAVE'S 3-4 hrs. ago.
2 more ideas gang!
1 - make a copy of the bill and take it when you GO TO VOTE ELECTION DAY; get as many folks as you can to sign up with the info IF they don't want to go to internet!
2 - Again, have a copy of Lynn's bill and take to your THANKSGIVING, CHRISTMAS, and NY day's celebrations with family/friends !
On option 1, I did this getting a long list of folks's names/states/comments for an online petition for actor/singer/dancer Dick Van Dyke. We were trying to get him NOMINATED for a KENNEDY CENTER HONORS AWARD without success. I know I got over 500 names myself, and the other 2 organizers got that many as well.
So this petition is far ahead of previous one I work on.
We found out the MAXIMUM names you'd give for ONE PC and maxed that. Rest of names were split up between folks for their entering to the max until we used up all the names given to me.
I don't know how long Lynne is planning on gathering names, but wanted to pass along these 2 suggestions I had while it was on my mind! Bettyg
IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[Big Grin]](biggrin.gif)
![[Wink]](wink.gif)
![[cussing]](graemlins/cussing.gif)
Printer-friendly view of this topic