posted
Everyone, I know this was posted as a reply in a thread, but I was a afraid that not everyone would find it there:
The National Capital Lyme Disease Association, with Founding Sponsor Turn the Corner Foundation, was pleased to host the Congressional Luncheon Briefing on Lyme Disease on Wednesday, September 24, 2008.
We want to offer our heartfelt gratitude to all of you for your support, in whatever form - emotional, financial or active participation through letters, congressional visits and phone calls - over these weeks leading to the luncheon briefing on Capitol Hill.
Thanks also, to Turn the Corner Foundation for making this possible with its generous support.
The goal of the briefing was to provide education and increased awareness in Congress of the growing Lyme epidemic and to suggest the need to establish a new Congressional record.
Congressional hearings would provide a firm and informed basis for decisive federal action on behalf of all tick-borne disease patients.
Wednesday's program conveyed the need for comprehensive research reflecting the entire spectrum of the medical community and for careful government oversight of the research process until these infections are conquered.
By all accounts and measures, it was a success!
We had over 100 in attendance.
We had it filmed and hope to have the program on our website by the end of next week.
It was also covered by our local ABC television station.
Keep in mind that our goal was to convince Congress of the depth of human suffering and loss of productivity caused by Lyme disease.
We wanted Congress to know that the controversy surrounding diagnosis, treatment and the existence of chronic Lyme has created a gridlock that requires their attention and action with an in-depth Congressional hearing and continued oversight.
Andy's film was beautifully edited to present the most important points.
Viewers were left with a clear picture of the opposing camps' thoughts and behaviors.
Most poignantly, however, it conveyed the suffering of patients left wounded on the battlefield.
The audience was extremely attentive!
Pam Weintraub delivered that missing middle piece - the independent, uncontaminated science - and with passion and eloquence, challenged Congress to investigate fully, but not to allow it's investigation to degrade into a "he said/she said" between the opposite extremes that would go nowhere.
She encouraged Congress to give hearing to the vast uncommitted central ground of scientists who are studying tick-borne diseases, where real strides are being made to unravel the mystery of these pathogens.
Pam and Andy both have given us so much more than a book and a film -- they continue to sacrifice their time, and invest their careers, to advocate for us.
Our gratitude for that is immense!
Dr. Samuel Shor, who is highly regarded among his colleagues as well as the community (Washingtonian's Top Doctor List), spoke about his transition of discovery from IDSA treatment to that of ILADS.
He gave examples of misdiagnosed case studies where he came to understand that many patients diagnosed with other diseases were, in reality, suffering from Lyme.
He shared his experience with the effectiveness of the ILADS treatment approach.
Dr. Robert Mozayeni, who has both Yale and NIH on his resume, briefly discussed co-infections and the dilemma of trying to diagnose Lyme in the typical short examination time allotted to each patient.
He emphasized the need to listen and remain open-minded to the nuanced and ever-changing world of science.
We were told not to be surprised that Hill people would come, eat and run.
In fact, very few left, even though it lasted longer than the allotted hour and a half.
Many took notes.
But what we want you to understand today is the critical role YOU played in this project!
Those phone calls you make to your legislator - you think they don't matter?
Take note: When we were delivering information to the offices, one of our volunteers walked into the office of a South Carolina legislator and upon announcing who she was and why she was there, she was greeted with "Oh, I was just on the phone with one of our constituents, and she was telling me about her struggles with Lyme.
Count me in.
I'll be at your briefing!"
During our visits to the congressional offices, we encountered many staffers who were personally affected by Lyme.
We believe that these experiences are going to lead some to read the book and view the DVD, then hopefully they will be shared with others.
Pam's book is now on their book shelves and will be more likely used as a resource when questions arise.
The clincher on this is the LETTERS you wrote.
They were transcribed on stationery and all were placed in envelopes addressed to your legislators.
Some were delivered Wednesday and the remaining will be delivered next week.
Every single Senator and Congressman is receiving a book and a DVD due to your generosity.
We know that many of you made a real sacrifice to do this.
Without your participation we would not have reached our goal.
To show the power of the DVD and the book, we'd like you to know about the commitment of Congressman Frank Wolf of Virginia.
He was so moved by Pam's book, donated by one of his own Virginia constituents, that he came to the NatCapLyme briefing.
At the briefing, he was so moved by Andy's film, that he then made a statement on the floor of the House of Representatives about the crisis of Lyme disease.
He sought a commitment for full hearings from Congressman Frank Pallone, the chair of the House Health subcommittee early in the next Congress.
This is but one example of the kind of impact educating your Senators and Representatives can have.
Although the exchange goes with Congressman Chris Smith supporting his bill, the important point is that momentum is building for full Congressional hearings and oversight.
So, YOU HAVE A JOB TO DO in the next six weeks when all Senators and Congressmen will again be home in their districts and states.
Visit them in their district offices and at town hall meetings, anywhere they are speaking and ask: Did you attend the NatCapLyme Lyme disease briefing?
If you didn't, did you send an aide?
What did you learn?
Will you support full Congressional hearings on tick-borne diseases in the next Congress?
Let them know it's important!
The graphics version of this message, previously sent, will be on our website soon.
This message is sent because some have said they could not open the graphics message, or would like to forward this message to text only listserves.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
National Capital Lyme & Tick-Borne Disease Association
posted
Wow lymeout...thank you for writing that...and taking the time to do that...
I agree there is momentum....
I have to put my 2 cents in....I know this is not a message about congress...and it may seem unimportant to some....
But I am very supportive of this film Andy has made...and continues to help us...our Lyme Community....
We are hosting a screening of the film for the first time at a medical establishment... Andy's film needs to be supported by US...he did this for US...
We gave the DVD to one of the resident doctor to view before hand.....she was very surprised at what she saw.......and IS coming on Monday...
Please consider coming ....we have someone that is traveling 70 minutes...and some from other states...not just NJ...we need to fill up those seats!!!
Thanks for your time...
mtree
Lymeto...I hope you don't mind....
..``Andy's film was beautifully edited to present the most important points.''
``Viewers were left with a clear picture of the opposing camps' thoughts and behaviors.''
``Most poignantly, however, it conveyed the suffering of patients left wounded on the battlefield.''
``The audience was extremely attentive!''
``Pam and Andy both have given us so much more than a book and a film -- they continue to sacrifice their time, and invest their careers, to advocate for us. Our gratitude for that is immense!''
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
This is all so incredible, thank you so much for summarizing and for all that has been done along these lines.
This is clearly one of the most important things that has happened in years; YOU GUYS ROCK!!!
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
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Thanks for sharing the news!
And I got an idea reading it!
Why not kill 2 birds with one stone?
If you are contacting your Congressional members anyhow...
Why not check the list at the link below and see if they have signed on to cosponsor the bill?
If they haven't... get them to. If they have... thank them.
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!
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