Topic: NEW UPDATE on Congress Actions- KEEP CALLING and PROTEST
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Just got this... looks like more action is needed!
TIME TO ROCK THEIR WORLD!!!
```````````````````````````````````````````````
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.
posted
Good !!! lets go and show them we really want to see our Lyme bill in a calendar for a hearing.
Posts: 983 | From The sky | Registered: Feb 2005
| IP: Logged |
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
--------------------
Posts: 819 | From New York, NY | Registered: Oct 2001
| IP: Logged |
"What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson Posts: 138 | From West Virginia | Registered: Sep 2007
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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
Posts: 561 | From mass | Registered: Jul 2007
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I would write other senators or call their offices.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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!
IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
We will betty, we'll get em'. I already hassled them a couple days ago. I'll ride them again of course.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
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 *****************************
IP: Logged |
posted
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!
Posts: 101 | From NJ | Registered: Apr 2008
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
posted
I, and all of my Lyme friends, are driving them crazy with phone calls and faxes. Keep it up!
Posts: 588 | From Rhode Island | Registered: Jun 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
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?
Posts: 262 | From nj | Registered: Dec 2007
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
```````````````````````````````````````````
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
posted
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.
-------------------- ...~*Just keep swimming, Just keep swimming*~... Posts: 120 | From New Jersey | Registered: May 2006
| IP: Logged |
When do we want it? Now!!
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
JUST got an update!
"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!"
`````````````````````````````````````````````
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.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
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!
![[rant]](graemlins/rant.gif)
![[Eek!]](eek.gif)
![[Big Grin]](biggrin.gif)
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[cussing]](graemlins/cussing.gif)
manners ![[confused]](graemlins/confused.gif)
![[woohoo]](graemlins/woohoo.gif)
Printer-friendly view of this topic