Town hall meeting or open house is a solid opportunity for patient advocates to communicate with our congressional leadership in Capitol Hill. We attended the August 14, 2007 Town Hall meeting held by Rep. Ron Klein and we thanked him for signing off on the addressed to the NIH Director - Dr. Zerhouni.

Click here to read the letter. 

We are pleased to report that from Florida Reps. Ileana Ros-Lehtinen and Robert Wexler also signed off on the NIH letter that we presented to them during the CFIDS Association Lobby Day 2007. If you live outside of South Florida please send P.A.N.D.O.R.A. an e-mail the information on any of town hall meetings in your area so we can publish on our web site.

We are extremely grateful for their support! If your representative has yet to sign this important advocacy letter, attending a town hall meeting is a perfect opportunity to take a copy fo the NIH letter to the meeting with you and to mention the name of his colleagues who are already supporting our efforts in Florida and beyond and ask him to add his signature and support. Below is the introduction letter that you need to combine with the letter from the NIH.

Click here for a letter of introduction from P.A.N.D.O.R.A. regarding your request addressed to a member of the Senate.

Click here for a letter of introduction from P.A.N.D.O.R.A regarding your request addressed to a member of the House of Representatives.

NOTE: You can use the letter of introduction simply as it is, download it to your personal computer and print it and attach the NIH letter above to it. You can use it as sample letter and modify it at your convenience.

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ADVOCATES EXTRAORDINAIRE!©IN ACTION

P.A.N.D.O.R.A.'s advocates Barbara Soliday, Dr. Lina Garcia who were part of the P.A.N.D.O.R.A.'s Florida delegation deserve our sincere gratitude as well.

Left to right- P.A.N.D.O.R.A. board and Advocate Extraordinaire Dra. Lina Garcia, Marly Silverman, founder of P.A.N.D.O.R.A., distinguished U.S. Rep. Eliana Ros-Lehtinen (Rep) and 2007 Advocate Extraordinaire Barbara Soliday

We are proud to say that P.A.N.D.O.R.A. delegates were able to get 3 Florida congressmen to sign up, more than any other state represented in the letter. Indeed it was a major accomplishment for our advocates Barbara Soliday and Dr. Lina Garcia who were part of the P.A.N.D.O.R.A.'s Florida delegation. They deserve our sincere gratitude as well. They walked the halls of Capitol Hill with efficiency, grace and perseverance. They were on a mission!

Advocates Extraordinaire Barbara Soliday and Dra Lina Garcia with P.A.N.D.O.R.A.'s founder Marly Silverman visiting Senator Bill Nelson's

office in Washington DC.

Pictures above are from right to left, Pat Fero, Executive Director of the Wisconsin CFS Association, the recipient of the prestigious 2007 Sand Castles Award Female Advocate and Marly Silverman standing in front of one of the Caucuses Room at our nation's capital.

A perfect visualization... wouldn't you say so?

We hope to engage our Florida U.S. Senators as well! Please send them a e-mail supporting P.A.N.D.O.R.A.'s efforts. We need to effectively create awareness and educate our Senators about the quality of life issues of our community. 

Ask in your e-mail: To support P.A.N.D.O.RA.'s appropriation request for the Florida Neuroendocrineimmune Institute (FNI); to join other senators and sign up on the letter spearheaded by Senator Reid asking Dr. Zerhouni to ensure that CFS/ME/CFIDS is given appropriate funding for much needed research; and participate and support our I NEED A HERO! Campaign for a congressional caucus.

 

From Left to Right Eva Dominguez, Sr. Legislative Aid, Office of Rep. Robert Wexler, 2007 Advocate Extraordinaire Barbara Soliday, Marly Silverman and 2007 Advocate Extraordinaire Dra. Lina Garcia

P.A.N.D.O.R.A. Advocates Extraordinaire Barbara Soliday and Dra. Lina Garcia

applying their advocacy skills at a meeting with a staff from Senator Bill Nelson. Also in the picture is a Kevini Mathis, a consultant with The Sheridan Group, a lobby firm in DC.

Left to right- Dra. Lina Garcia, Marly Silverman and Barbara Soliday at

Senator Mel Martinez' office in Washington DC

Left to right - Marly Silverman, Legislative Aid for Senator Lamar Alexander and Barbara Soliday

 

 

THE EMPTY CHAIR© PROJECT

A P.A.N.D.O.R.A. grass roots project calling attention to the fact that the majority of CFS/ME patient advocates cannot attend the CFSAC meetings in Washington DC due to disability, logistics and financial challenges. P.A.N.D.O.R.A. for the past 2 years, and in partnership with other sister organizations, has asked the Dept of Health and Human Services (DHHS) to use current and existing techology to provide access "in real time" to CFSAC public meetings.

Budget and privacy issues have been raised among the reasons why this is not possible. However, no one has really provided a definite "official response" to our request on this issue, only possible concerns have been raised in a government response to P.A.N.D.O.R.A.

"Real time access" could allow patient testimony from a remote location, either by phone or with computer and microphone cameras and would open the meetings to the stakeholders who are the intended, targeted, most concerned and deserving audience.

And here is how the Empty Chair© Project came about! We placed large pictures or CFS patients who wanted to attend the CFS Advisory Committee meeting, but due to the challenges of CFS/ME could not be there in person.

Sister organizations who participated in this project were the Wisconsin CFS Association, the Vermont CFIDS Association, the Massachusetts CFS Association, F.A.C.E.S and the CFCC (Chicago), AFFTER and with the support of other individuals within our nationwide community.

 

International 2007 Advocate Extraordinaire and our board member Dra. Lina Garcia at the CFS Advisory Committee Meeting at the Department of Health

and Human Services in Washington DC

From left to right - CFS Advisory Committee member Rebecca Artman and CFSAC Chair Dr. James M. Oleske, Marly Silverman and a patient who testified at the CFSAC meeting with her father at her side.

P.A.N.D.O.R.A.'s participation in the CFIDS Lobby Day was enhanced by the opportunity to also attend the 2-day CFS Advisory Committee meeting at the Department of Health and Human Services. It was extremely rewarding for our delegation to watch Rebecca Artman, the sole patient advocate in this distinguished committee representing our patient community so well!

Left to right - 2007 Advocate Extraordinaire and PANDORA Board Member, Dra. Lina Garcia, Dr. Nancy Klimas, CFSAC member and member of PANDORA's Medical Advisory Board and 2007 Advocate Extraordinaire Barbara Soliday

 

 

We hope to engage our Florida U.S. Senators as well! Please send them a e-mail supporting P.A.N.D.O.R.A.'s efforts.

We need to effectively create awareness and educate our Senators about the quality of life issues of our community. 

Ask in your e-mail: To support P.A.N.D.O.RA.'s appropriation request for the Florida Neuroendocrineimmune Institute (FNI); to join other senators and sign up on the letter spearheaded by Senator Reid asking Dr. Zerhouni to ensure that CFS/ME/CFIDS is given appropriate funding for much needed research; and participate and support our I NEED A HERO! Campaign for a congressional caucus.

Do you know that there are 25 representatives in the House from Florida? In the future we will need your help to engage your Florida House representative to support our I NEED A HERO! campaign to establish a Congressional Caucus for CFS, FM, GWI and MCS (neuroendocrineimmune disorders).  The same needs to be repeated across the nation.

P.A.N.D.O.R.A.'s participation in the CFIDS Lobby Day was enhanced by the opportunity to also attend the 2-day CFS Advisory Committee meeting at the Department of Health and Human Services. It was extremely rewarding for our delegation to watch Rebecca Artman, the sole patient advocate in this distinguished committee representing our patient community so well!

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I Need A Hero Project - Congressional Caucus and more!

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The Empty Chair Project - a personal note by Marly Silverman

During my testimony to the CFS Advisory Committee, I mentioned the Empty Chair Project and what it meant to our community. I also highlighted the Vermont CFIDS Association involvement with this project.  I also stated that we would bring the Empty Chair project to every CFSAC meeting until they had the capability to broadcast the meeting in "real time" to the disabled members of our community who can't afford or are not physically able to travel to Washington DC because they are too ill. The picture from the Vermont CFIDS Association shows the gathering of 22 individuals determined to make a difference for our community in Vermont and beyond.