Just got this... looks like more action is needed!
TIME TO ROCK THEIR WORLD!!!
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MAKE YOUR VOICE HEARD
CONGRESS:
~ IS BOWING TO IDSA PRESSURE ~ IS IGNORING LYME DISEASE ~ IS LETTING THE LYME BILL DIE ~ IS IGNORING LYME DISEASE & OUR ACCESS TO CARE
HELP THE LYME BILL & DEFEAT THE IDSA
- HR 741 is not on the House Health Subcommittee calendar.
- ONLY Congressman Pallone can put it there
- ONLY YOU can make him put it there
- Don't let the Lyme bill die! We only have weeks left!
- Show Congressman Pallone:
LYME PATIENTS HAVE THE RIGHT TO BE HEARD & WE NEED A BILL HEARING
WEDNESDAY MAY 7TH ~ 11AM - 2 PM
OFFICE of Congressman Frank Pallone (NJ-6)
504 BROADWAY, LONG BRANCH, NJ 07740
REMEMBER: HR 741 THE LYME & TICK-BORNE DISEASES BILL
Provides money, focus and an advisory committee on Lyme & tick-borne diseases. A hearing on the bill enables scientists & doctors to educate Congress about Lyme issues.
These calls, faxes , and emails are essential. We made about 2,000 calls on Friday and want to keep that number up everyday.
If you have not already called and emailed the people Tincup lists, then please do so now. If you've already done that get anybody you know to contact those legislators. This is an urgent issue. Thanks, Ellen
Posted by Mtgirl (Member # 13278) on :
up!up!up!up!
Posted by Tincup (Member # 5829) on :
up sa daisy...
Posted by METALLlC BLUE (Member # 6628) on :
up
Posted by KS (Member # 12549) on :
I'm just curious...what has been communicated that tells us we are losing this bill??
For those of us that have already contacted Kennedy, etc. and live out of state and can't be present for the protest, what can we do in support of the protest? Send stories/emails to Congressman Pallone?? Call??
Kristin
Posted by METALLlC BLUE (Member # 6628) on :
I would write other senators or call their offices.
Posted by bettyg (Member # 6147) on :
quote:Originally posted by KS:
I'm just curious...what has been communicated that tells us we are losing this bill??
For those of us that have already contacted Kennedy, etc. and live out of state and can't be present for the protest, what can we do in support of the protest? Send stories/emails to Congressman Pallone?? Call?? Kristin
michel, WE'VE GOT TO CONVINCE PALLONE!!! read the rest of my post ok for other ideas!! thx
kristin, have you CALLED AGAIN TODAY; that's a beginning.
edited: i keep showing 1408; it's s1708 !! i transpose a no. from HR bill every time! darn!
call your FEDERAL SENATORS, S 1708 bill or HOUSE REPS; ASK THEM TO BE A "CO-SPONSOR" to HR 741 for house reps! WE NEED THEM TO DO THIS TODAY; again critical the amount of CO-SPONSORS to each bill being discussed!
the more co-sponsors, the greater chances Pallone/committee will decide to put THOSE on their agenda for near future hearings!!!
how about emailing a 1 page letter outlining your story to: KENNEDY, PALONNE, & DANDEL, sp !!
can you do this TODAY! TIME IS CRITICAL since they are working on agenda WHICH bills to discuss this quarter; or however often they decide to do this.
if you go to ACTIVISM, read phyllis mervine's post about WHICH OTHER BILLS are up for discussion; ALL WORTHWHILE !!! **********************************
thanks for offering to do whatever you can.
I'm out of state, but email galore and on rare occasions, call DC without having a FREE cell phone to use for unlimited phone calls! Posted by METALLlC BLUE (Member # 6628) on :
We will betty, we'll get em'. I already hassled them a couple days ago. I'll ride them again of course.
Posted by bettyg (Member # 6147) on :
i just called again the 3 offices in 4 minutes!
explained who i was, please put this on their hearing agenda as the bill has been there 10 years with NO ACTION AT ALL.
it's we lyme patients are the ones suffering for this; out of pocket expenses for medical and traveling since IOWA DOES NOT HAVE A CHRONIC LLMD HERE,
infectious drs. wrote congresss, and it's full of 50-75% LIES.
we need to get both sides out on the table and go from there as again, it's us PATIENTS, NO ONE ELSE, that is suffering for this.
yes, our llmds are...but i didn't say that to them.
i asked pallone's man if they'd gotten many calls; YES!
last call to dingle's office ... i got someone who listened and SLAMMED DOWN THE PHONE AS SHE SAID THANK YOU FOR CALLING! manners *****************************
Posted by Lymetoo (Member # 743) on :
up
Posted by KirstenS (Member # 15146) on :
I am planning on making this! The only reason that would keep me away is not being able to get out of bed.
But, the way I look at it, looking absolutely horrible from being ill from Lyme will be a good thing!
Posted by Tincup (Member # 5829) on :
Anyone from COLORADO!!
Or if you know someone in COLORADO!!!
NO ONE from that state has signed on as a co-sponsor. You have 30 different kinds of ticks there!
They want to hear from YOU.. not me cause I am not FROM Colorado.
Please call ASAP. THANKS!!!
Sennator Wayne Allard
(202) 224-5941
and
Congresswoman Diane DeGette
(202) 225-4431
THANK YOU!!!
Posted by Tincup (Member # 5829) on :
Good for YOU!
Thanks! Let's keep up the calls and rock the boat.
Kirsten... glad you can go!!! Wonderful news!!!
Posted by KirstenS (Member # 15146) on :
I will also call tomorrow and have some friends and family do so also.
I cannot retain and research at times due to my neuro lyme but I want to thank you all for your wonderful information
You have no idea how much everyone is helping me! Thank you everyone!!!!!!!!!!!!!!!!!! Posted by luvdogs (Member # 9507) on :
I, and all of my Lyme friends, are driving them crazy with phone calls and faxes. Keep it up!
Posted by Tincup (Member # 5829) on :
You all make me smile real big!!!
THANK YOU!
And keep calling till they cry "UNCLE"!!!
NOW is our chance to tell them what we think!!!
Posted by Tincup (Member # 5829) on :
CALL, CALL, CALL, CALL, CALL, CALL, CALL, CALL!
Posted by METALLlC BLUE (Member # 6628) on :
I have a relative in every state *wink wink*, so just call and call and call, and call. Call everyone. My "relative" works at the state DMV, so I just put that address. He gets his mail there *wink wink*.
Hope that helps folks.
Posted by Tincup (Member # 5829) on :
WAY TO GO!!
I called the offices today and ALL of them say they have gotten LOTS of calls for a week!
Keep it up!!!
Don't let them think we are going away!!!
How about a letter to your local editor?
Tell them the IDSA sucks!
Be nice though. And call call call!!!
Fax fax fax too!
And contact YOUR representatives in YOUR state and tell them you want THEM to help you by taking to these people to get the bill out of the committee.
Can someone post a sample of a fax letter. What info to include etc. It would make it easy for some of us lyme brains.
I have called all 3 and Pallone's office took my contact info. Should I keep calling with the same info?
Posted by Tincup (Member # 5829) on :
NJ Girl...
Good for you!!!!
Here is a sample letter from the LDA site...
I broke it up for easier reading here.. but a link to the site to copy and paste it from is below.
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SAMPLE letter asking House Representative for bill support:
E-mail or fax your letter (personalized if possible) to the Washington , DC office.
Your First & Last name Your Street Address City, State and Zip Code Your Phone Number
Month day, year
The Honorable xxxx xxxx U.S. House of Representatives
Dear Representative xxxx:
Please co-sponsor ``The Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2007'' (HR 741 Chris Smith/Bart Stupak) which has a companion bill in the senate S 1708 (Dodd/Schumer/Hagel).
Tick-borne diseases (TBD), especially Lyme, are an increasing worldwide problem,* with concerns expressed about Lyme disease by a number of agencies, including the UN and the World Health Organization, which are looking at global environmental and health-related issues.
Yet, funding is not forthcoming from government sources and has even decreased for Lyme despite rising case numbers.
In fact, its funding is being vastly overshadowed by funding for other less prevalent diseases like West Nile Virus (WNV).
In 2005, the government expended about $32.6 million (down from $33.6 million in 2004) on Lyme disease and $80.8 million (up from $77.6 million in 2004) on WNV, despite the fact that there were 8 times more Lyme cases reported than WNV cases.
Additionally, there are 10 times more cases of Lyme disease that meet the Centers for Disease Control and Prevention (CDC) criteria than are reported.
In 2005, the final CDC reported numbers show 23,305 reported Lyme disease cases nationally; translating into 233,050 actual new cases that met CDC criteria.
No one knows how many occurred that do not even fit CDC surveillance criteria.
Lyme disease, the most common vector-borne disease in the United States , is usually contracted by the bite from a bacteria-infected tick.
In humans, infection with Lyme disease bacteria can lead to early symptoms such as severe headaches, debilitating fatigue, joint pain, and skin rashes, while long-term symptoms can lead to problems related to the central nervous system including the brain, heart, joints and other musculo-skeletal problems.
Symptoms of Lyme disease vary for each individual patient, and also vary in intensity over the course of the disease.
The long-term cost of Lyme disease to families, school systems, the health care system, and the economy is astounding.
According to a study published in 1993 in Contingencies, an actuarial trade publication, the cost to society for Lyme disease was about one billion dollars per year.
The average treatment and diagnosis and lost wages related to Lyme disease was $61,688 per year per patient.
Cases have doubled since then, so today's costs are probably $2 Billion or more annually.
Despite the prevalence, severity, and economic costs of this illness, patients with Lyme disease are having increased difficulty obtaining diagnosis and treatment.
You are in a unique position to right this wrong. Your co-sponsorship and vote for HR 741 (Smith/Stupak) are essential. It will improve surveillance and prevention of Lyme disease, the development of accurate diagnostic tests, physician education, and it will fund additional research to determine long-term course of illness and the effectiveness of different treatments.
It also sets up a federal task force to coordinate the federal efforts to combat Lyme disease.
I am sure you agree that Lyme disease patients and the public deserve more from our health care system.
Sincerely,
SIGNATURE (If email, no signature is necessary, but type in your name) Your First & Last Name typed
His office is only minutes away from my home. I am recruiting people to come with me. I will be there with my voice, my opinions and my picket!!
I will start my harassing calls today.
Many thanks for this thread.
Posted by proudtoserve (Member # 14811) on :
It is only a couple minutes from my house as well.
I will be there along with my family.
Posted by Robin123 (Member # 9197) on :
For the ralliers:
What do we want? Our Lyme bill hearing!!
When do we want it? Now!!
Posted by Tincup (Member # 5829) on :
Proud!!! I just came here looking for this link to take to your most recent post.
I see you WILL be there!
Did you know the Military Group is showing up with signs and loud voices too? The military ducks don't help.. but the military's research division is LIGHT YEARS ahead of all of us.
I am asking you a favor... if I may be so bold?
Since you are so close... is it possible to rally some of your military or other friends to help represent those of us too sick to make the long trip?
They don't have to have Lyme disease to protest.. and we need a HUGE showing!
How I would LOVE to see the marching bands there too!
"Media will be there & Congress will be watching to see how strong we really are.
We MUST have a strong showing!!
Please be sure to visit LymeRights.org for updates and to sign up - it's important to have an idea of how many people to expect & what states will be represented.
Together we CAN make a difference!"
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Yes.. be sure to sign up so the press will know (packages of info need to be prepared for them in advance by volunteers) how many people approximately will be there and how many states will be represented.
Posted by daise (Member # 13622) on :
Media will be there!
daise Posted by Tracy9 (Member # 7521) on :
How can we see who is signed up to go?
Posted by Tincup (Member # 5829) on :
Will try to answer questions later.
Now is bed time.
Up for morning crew...
CALL, CALL, CALL, YA'LL
Posted by Tincup (Member # 5829) on :
You do know that you are making history here!
This effort is something you will always remember.... Well, with Lyme? HA, who knows!
But anyway... the point is... it is a good lesson for the kids too. Show them that you stand up for what is right! That you care about their future!
If everyone found ONE more person to call today... we could rock their boats! Numbers DO count!
Posted by Tincup (Member # 5829) on :
Oh yeah...
More info to come (questions answered) on the www.LymeRights.org site... check tonight or tomorrow.
Posted by Tincup (Member # 5829) on :
STILL NO promises from Pallone! Keep calling!!!
Grrrrrrrrrrrrrrr...
Posted by Tincup (Member # 5829) on :
I just heard there are updates posted on the Lyme Rights site...
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