EDIT- See new action below. And thanks for your help in getting this accomplished. We are making progress!
`````````````````````````````````````````````````` URGENT ** ACTION ALERT ** NEW YEAR'S EVE
TAKE ACTION TODAY! THANKS.
Sorry for holiday intrusion. We understand that the holidays are a difficult time to ask you to take action, but we are faced with a situation where we must act now to prevent a dangerous setback for the Lyme community.
TO: Everyone across the country
FROM: Lyme Disease Association, Time for Lyme, and CALDA
DATE: December 31, 2009
WHEN: On January 4, 2010, the NJ Senate Health Committee intends to go forward with resolution SR 133, which puts Lyme disease, a specific disease with known etiology, in with autoimmune disorders of no known etiology, such as chronic fatigue, fibromyalgia, multiple chemical sensitivity & Gulf War Syndrome.
The proposed resolution for an autoimmune treatment and research center is the result of a behind the scenes effort initiated by a handful of people in the chronic fatigue community.
Their plans to lump Lyme disease in with CFS and disorders of unknown origin has the potential of redirecting current and future funding away from finding a cure for those with active spirochetal and other tick borne infections.
Lyme patients and organizations across the country have worked hard over the years to establish, support and promote treatment protocols that will address active tick borne infections.
Lyme disease patients will not benefit from a merger with autoimmune disorders, and in fact, could suffer a tremendous set-back if this were to occur.
>>> WHAT: Call or fax the following NJ Senators today.
Tell them you do NOT want Lyme disease in a center with disorders of unknown origin. Tell them the ONLY solution is to remove the words ``Lyme disease'' from the resolution. Leave your name contact info.
Senate Health Committee **** FAX **** PHONE
Allen, Diane B. **** FAX 609-239-2673 **** PHONE (609) 239-2800
Baroni, Bill **** FAX 609-631-0324 **** PHONE (609) 631-9988
Gordon, Robert M. **** FAX 201-703-8127 **** PHONE (201) 703-9779
Kean, Jr., Thomas H. **** FAX 908-232-3345 **** PHONE (908) 232-3673
Redd, Dana L. NO LONGER IN OFFICE.
Rice, Ronald L. **** FAX 973-371-6738 **** PHONE (973) 371-5665
Singer, Robert W. **** FAX 732-901-0587 **** PHONE (732) 901-0702
Whelan, Jim **** FAX 609-383-1497 **** PHONE (609) 383-1388
Vitale, Joseph F. **** FAX 732-855-7558 **** PHONE (732) 855-7441
BACKGROUND: For those who need background information on the issue:
In a clandestine behind the scenes movement, the chronic fatigue community worked to get the introduction and passage of a resolution in the NJ Assembly in May of this year and although they included Lyme disease as one of the autoimmune disorders having an unknown origin, they did not consult with or inform Lyme patients or the Lyme Community of their plans.
The resolution calls for the establishment of a neuroendocrine immune (NEI-a term coined apparently specifically by these advocates) treatment and research center in New Jersey after their plans to have one in Florida were abandoned.
The chronic fatigue advocates were joined by a few Lyme patients who met in NJ to quietly have this passed. One CFS advocate associated with the UMDNJ promoted his personal agenda for a center with what appeared to be the backing of the University of Medicine & Dentistry (UMDNJ).
After we investigated, we found that not only did he not speak for UMDNJ, the UMDNJ is not supporting this resolution nor the creation of the center.
The NEI advocates also stated the proposed center had the backing of the CDC & NIH. We checked with these government agencies and the Lyme program officers knew nothing about their plans for a NJ center or their plans to establish additional autoimmune centers in other areas of the country with the same mission.
[ 12-31-2009, 05:53 PM: Message edited by: Tincup ]
Posted by Tincup (Member # 5829) on :
Please keep this at the top during the day! Thanks so much!!!
Posted by joalo (Member # 12752) on :
Up.
Posted by Tincup (Member # 5829) on :
Yo... anyone making these calls?
You can do it!
Especially if you don't want to be told to take anti-depressants and get more exercise the next time you go to a doctor.
I am part way through the list now.
How about you?
Posted by Tincup (Member # 5829) on :
Hey j....
Thanks! Looks like we posted at the same time. But you won!
Posted by ping (Member # 6974) on :
Oooh, I can call a couple of these folks now, before I hit the road. Hope everyone else can call a few as well. Thanks Tincup!
Posted by jenny76 (Member # 18205) on :
If I want to get this out on my facebook page how do I post this? Do I have to post a link?
Posted by Tincup (Member # 5829) on :
Oh facebook...
I don't have a clue how to do that but it would help a lot!
THANK YOU!!!
Posted by Tincup (Member # 5829) on :
Hey ping... good thing!
That rhymed! tee hee hee
Thank you!
Posted by Tincup (Member # 5829) on :
Update!
Got my calls done in between many side things that popped up.
Main thoughts here....
Looks like they are getting a number of calls. That is GREAT!
One office called it "the Lyme disease thing." I thought that was kind of funny.
Interesting some office staff knew someone with Lyme .. some didn't. Those who did were more attentive.
Some (one or two) offices were closed for the holiday already.
Other had mailboxes on answering machines that directed you to specific people... some of the mail boxes were full already. I just pushed the option for another person when that happened.
One was a wrong number... which I will look up and try to fix.
Keep calling and thank you VERY MUCH!
Posted by Tincup (Member # 5829) on :
Just heard an update on Senator Dana Redd. No longer in office and phones disconnected. Went on to be mayor of Camden, NJ?
That spot on Senate Committee won't be filled till later in the year.
I will edit her off the list above.
Posted by Dekrator48 (Member # 18239) on :
I just made the calls and here is an update:
Sen Gordon, Kean, Rice, and Whelan's voice mailboxes are full.
Sen Vitale's office told me that the Sen is taking this resolution off of the agenda for Jan 4 and a new agenda is being issued.
Maybe the squeaky wheel gets oiled first!
Posted by Robin123 (Member # 9197) on :
Good news, Dek! Looks like the calls are working!
I just called them all and left a message. Got the same full mailboxes but did get transferred to another for Rice/Whelan.
Redd - wrong number
Vitale's office is not answering at all.
I also chewed them out for including fibromyalgia as an unknown syndrome when mine and so many other fibro people I know from my past have been coming in with Lyme and some with co-infections.
Thx TC and everyone working on this issue!
Posted by Tincup (Member # 5829) on :
Well that is GREAT news!
Your effort is paying off ... so far so good! Thanks for letting me know this information Dek and Robin 359365.
Since it is getting late and the phone boxes are full...
I just completed a list of emails so we can contact the offices that way, over the weekend, to let them know how we feel.
Once it is checked over by the "smart" people and approved for prime time... will post it for you!
It is nice to have you all doing this! Thank you SO much!
Posted by Dawn in VA (Member # 9693) on :
UP
Posted by Tincup (Member # 5829) on :
December 31, 2009 - UPDATE on contacting NJ Senators.
The NJ Senate offices will be closed for the holiday. Some of their phone mail boxes are currently full and are not accepting new messages. Please feel free to fax or use the email addresses below to contact the NJ Senators.
Some have web sites with contact forms and additional contact information, others have direct emails.
Your message can be very short and simple. Sample letter:
Dear Senator,
Please do NOT vote to pass SR-133 with the words ``Lyme disease'' included anywhere or anyway in the Resolution.
Thank you.
(Your name and address, and if you represent a group, name it)
Weinberg, Loretta [email protected] Posted by Tincup (Member # 5829) on :
Dawn... thanks for bringing this up!
Posted by Tincup (Member # 5829) on :
Up again... for those who might want to deliver a last minute kick for justice for Lyme patients before the new year ends.
Posted by Tincup (Member # 5829) on :
And you might want to toss the moderators a chocolate bar so they won't pull the plug on this post.
I hear they can be bribed... with the right chocolate that is.
Thanks for your kindness and patience you dear sweet moderators.
Posted by kelmo (Member # 8797) on :
Sending it up again
Posted by Tincup (Member # 5829) on :
HAPPY NEW YEAR!
Thanks Kelmo.
Posted by Tincup (Member # 5829) on :
Up for the weekenders.
Posted by Abxnomore (Member # 18936) on :
Sending this back up!
Posted by Tincup (Member # 5829) on :
Thanks ABX... good to see you are back! You were missed!
I have posted a pile of stuff about the proposal for those asking questions. Sorry about the format and length. A bit under the weather and trying to keep going.... so hope it makes sense.
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