Advocates Extraordinaire
THE EMPTY CHAIR© PROJECT CONTINUES IN FULL MOTION!
The Empty Chair© Project was once again highlighted during the last CFS Advisory Committee meeting on November 28-29, 2007 in Washington DC.
Marly Silverman attended the meeting on behalf of P.A.N.D.O.R.A. I am yet to finish a short report about the two-day meeting. The CAA released their report about the meeting. There will be changes in the membership and we need to ask Congress to increase the budget for the committee so a podcast and "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.
In order to continue with the spirit of the Empty Chair© Project, our grass roots initiative, we placed once again large pictures or CFS-ME patients who wanted to attend the CFS Advisory Committee meeting, but due to the challenges of CFS/ME could not be there in person.
I am pleased to say that we are getting the DHHS's attention. According to the information P.A.N.D.O.R.A. has received, a request for funding to be applied towards broadcasting of the CFSAC meetings is being processed within DHHS to get this accomplished! We will continue to display the Empty Chair Project Display until our community gets what it needs!
Look at the new pictures below!
Sheila Stevens, who was noted in 2007 as one of the most prolific advocates involved in letter writing campaigns and honored by the CFIDS Association of America, Inc.
Dr. Lily Chu and Carolyn Field from California. Two outstanding advocates
now collaborating with P.A.N.D.O.R.A.
Marly Silverman, Founder of P.A.N.D.O.R.A. and part of the display of
the pictures used for the Empty Chair© Project
Rebecca Artman, the sole patient advocate member of the CFS Advisory Committee and P.A.N.D.O.R.A.'s Public Policy and Community Advisor. Please note in the background NIH officials: Drs. Eleanor Hanna, Cheryl Kitt and her assistant
You can see the pictures from left to righ first row bottom of Advocates Extraordinaire Bonnie Mayer, Bonnie Meyers (one of our founding board members, now retired) and second row members of the The Vermont CFIDS Association and Advocate Extraordinaire Barbara Soliday
ADVOCATES EXTRAORDINAIRE!© IN ACTION
P.A.N.D.O.R.A.'s 2007 Advocates Extraordinaire Barbara Soliday and Dr. Lina Garcia (from Colombia) who were part of the P.A.N.D.O.R.A.'s Florida delegation during Lobby Day May 14-15, 2007, also attended the CFS Advisory Committee 2 day meeting at our nation's capital on May 16-17 on behalf of P.A.N.D.O.RA. They deserve our sincere gratitude for their committment to Advocacy and to our community!
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.
Pictured 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 learned advocacy skills at a meeting with a staff from Senator Bill Nelson. Also in the picture is 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.
WE SALUTE SPECIAL 2007 ADVOCATE EXTRAORDINAIRE!© - Featuring SANDI LANFORD, Founder of The Lanford Foundation-Lifelyme, Inc.
June 2007
Archive:
Clara Valverde
Click here for the 2007 Advocates Extraordinaire! Advocacy & Leadership Training flyer and for the Sand Castles Awards information at the IACFS Conference
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