Monday, October 20, 2008

Lyme Disease and Congress

From 6:30 PM to 8:30 PM at the Hampton Bays Public Library
52 Ponquogue Ave, Hampton Bays

From 6:30 PM to 8:30 PM at the Baldwin Public Library
For directions to Baldwin Public Library, please scroll down
or for Hampton Bays, go to

Our US Congressional Lyme Briefing ~ What We Can Do Now!
We thank the National Capital Lyme and Tick Borne Disease Association, Turn The Corner Foundation, Andy Wilson, Pam Weintraub and all who made the great effort of the September 24 Congressional Briefing on Lyme disease possible.
****From Monte Skall:****
In the next six weeks when our Senators and Congressmen will again be home in their districts and states.
Please visit district offices and go to town hall meetings, wherever 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! (Please see below for more details)

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.
If you want to see it click on this link:
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 each20patient. 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 Congress man 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.
See the exchange between Wolf & Pallone at:
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.

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