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WHAT THE NEW XMRV VIRUS AND WHAT IT MEANS TO CHRONIC FATIGUE SYNDROME PATIENTS
The November 7, 2009 Lecture presented by Dr. Nancy Klimas and sponsored by P.A.N.D.O.R.A., in partnership with me-cfscommunity.com and the local support groups, was a huge success. It was a full house!

Dr. Klimas provided a outstanding presentation. She answered great questions from the audience. She was at her best! We are lucky to have a physician researcher of her caliber in Florida. PANDORA understands fully well the financial burden that CFS-FM imposes but if you have the opportunity to make a charitable donation during the year, I strongly recommend that you send a check to the CFS fund that the University of Miami has for specific CFS research. She has a couple of research studies that needs follow up and revamping due to the recent discovery of the XMRV virus. Here is your opportunity to take ownership of your personal medical situation in a very empowering way. Any amount is "well-comed". If you need additional information on how to donate to Dr. Klimas research studies you can either e-mail Marly Silverman at msilverman@pandoranet.info or Elizabeth Goldberg at 305-243-3492. Her e-mail is: EGoldberg@med.miami.edu

We would like to thank all of the volunteers who helped make this event a success: Barbara Soliday, Pat Sonnet, David Breen, Bruce DeRuzza, and our directors Beth Gilbert & Yvette Taylor and of course Sugar Smookler, our administrative assistant. We also would like to thank David Adonailo, David Breen and Zachary Barnes from the University of Miami, for helping with the loading and unloading of Marly's car. We are also grateful to Daniel Moricoli for recording the event. He will post the video here and we will disseminate as well.

Picture courtesy of: www.RobertMayerimages.com

Lastly, our gratitude to Elizabeth Goldberg for her assistance and professionalism in getting us the facility at the University of Miami that was perfect for this meeting.

Here are additional pictures of the XMRV lecture:

Picture courtesy of www.RobertMayerimages.com

Picture courtesy of www.robertmayerimages.com

We will post the rest of the pictures soon on our web site, our facebook page

1Voice, 1Community, 1Cause

MARK YOUR CALENDARS! Bob Mayer will be interviewing Dr. Klimas on NBC6 on Friday, November 13 th during his South Florida Today show which airs from 11:00 AM - 12:00 PM. They will be discussing the XMRV retrovirus as well as other topics of interest to those of us in the CFS/ME community. You won't want to miss this interview. (further inquiries NBC 6 or Pandora). (NBC 6 is WTVJ in Miramar.)

CFSAC MEETING ON OCTOBER 29-30, 2009.
Please go to PANDORA's youtube.com page to see the video testimonies by researchers and physicians as well as the outstanding testimonies delivered by patient advocates who despite the illness and financial concerns made the long track to go to our nation's capital.

We want to acknowledge our Advocate Extraordinaire Denise Lopez-Majano, a mother of children with CFS, who is the star of a new video we posted on our youtube.com page; and Mike Dessin, another Advocate Extraordinaire, , who also delivered a poignant testimony (also on our youtube.com page and here on me-cfscommunity.com), for accompanying Marly Silverman to lobby on Capitol Hill. We had a couple of outstanding visits with legislators.

We would like to share the logos with you that were chosen for the NEI Center and for the Advocates Extraordinaire Program. The logos were created by an amazing artist - Sebastian Chico. Sebastian worked with Marly for weeks trying to grasp the message we needed to convey through the logos. After tons of e-mails going back and forth between the NEI Center team working with Marly and with Sebastian, the choices were made. Thank you Sebastian for the wonderful gift of beauty you bestowed to PANDORA and to its members. Marly is very grateful for your gift of time and for working with her. Side note: She still says that as far as soccer (futebol) is concerned well, the Brazilian team still is number one but because of you, the Argentinean team is now the next team that she will cheer on when the World Soccer Cup comes in place.

Here are the beautiful logos:

THANK YOU SEBASTIAN!

PANDORA trough Marla's blog - Agent for Change, is conducting Click here for another single poll question. Paste this link in your browser if necessary: http://tiny.cc/bvwgv
The results of the one single question poll will be shared with several New Jersey State Senators & Assemblyman as well as U.S. House Representatives during a meeting on September 16 to create additional support for the NeuroEndocrineImmune Center(tm) in New Jersey.

September 8, 2009
Here are some of the pictures of the FM-CFS Empowerment Group MTG on September 3, 2009, ini which Marly Silverman was the guest speaker. It was a nice reunion, since Marly was one of the co-founders of the group with Dawn Broksch in 2001. The group meets every first Tuesday of the month, unless a holiday interferes. click here." target="_blank">Click here for complete information about the group.

Seen below is Steve Kruger, group facilitator and a PANDORA member with Rosa Albert, Director, Hispanic Community Outreach.

Pictured below is Yvette Taylor, Director, PANDORA & Newsletter Editor, sharing a nice smile with group members.

Pictured below is Evelyn Boyles sharing information with the group. Evelyn facilitates the Fibro "Empower and Enrich" Program, Education, Empowerment and Energy!

For more information about the Pembroke Pines groups click here click here.

OUR ANNUAL CHARITY YARD SALE - August 8, 2009 WAS A HUGE SUCESS!
Many thanks to The Ft. Lauderdale/Pompano Beach Neuroendocrineimmune Disorders Empowerment Group for hosting our ANNUAL YARD SALE!

We sold everything: Dresses, shirts, jeans, handbags, toys, books, ski clothing, sweaters, small electronics, custom jewelry, paintings and household items. If we didn't have it, you didn't need it!

P.A.N.D.O.R.A raised $595.50 and Emily
Roy , a 6-year old neighbor from across the street set up a lemonade stand with cookies and donated $34.50 to the event efforts. Total raised: $630.00.

Pictured below is Emily Roy. We are amazed by her desire to help the chronically ill.(I am experiencing some technical difficulties will try to post Emily's picture later).



Special Thanks to:

The Hillsbore Shore neighbors & friends who contributed with donated items on Beacon Street and to our neighborhood dry-cleaners: PRO-CLEANERS located at 914, Pompano Parkway, Pompano Beach, Florida 33069. Phone: 954-975-4763. Alvaro & Bibi Jaramillo, the owners of Pro-Cleaners, provided us with the clothing racks so we could display the clothing donated for the yard sale. Thank you Alvaro for your support of PANDORA and we wish you continuing success with your business.

We are grateful to the following board members and volunteers who participated before & during the Saturday's event:

Suely Campos, Teresa & Ed Reid, Yvette Taylor, Marly & Stephen Silverman, Sugar Smookler Howar, Janet & Emily Roy & Pam Roth!

Special appreciation to Cheryl & Matt Prchal for their donated items. Many neighbors from the area purchased some of our items at a great price.

UPDATE! WE RAISED $5,552.00 (including in-kind donations at the GILBERT'S FUND RAISING EVENT ON JUNE 8, 2009, WOW!
CLICK HERE FOR THE GILBERTS' FUND RAISING EVENT PICTURES. On June 8, 2009, We had a pre-release of the new documentary that Rik Carlson and Michael Thurston are producing titled INVISIBLE at the Gilbert's 17th Street Grill Dinner & a Movie. We raised $3,779.50. The food was wonderful, everyone had a great time and the hostess Beth Gilbert and her parents Lenore & Bob Gilbert were wonderful sponsors for this event. Dr. Nancy Klimas made a short presentation to the audience. We launched our on-site & an online auction on Ebay Giving Works.

A new line of products will be available our PANDORAONLINESTORE Soon..
you can click here. Please Keep checking because we rely on volunteers been able to input the items we have available for sale to benefit our mission.

Happy Bidding!

CDC VOTE OF CONFIDENCE POLL AND A CALL FOR ADVOCATES TO PARTICIPATE IN THE ADVOCATES EXTRAORDINAIRE PROGRAM/NEUROENDOCRINEIMMUNE DISORDERS RESEARCH CENTER PROJECT.

June 4, 2009
Dear Friends,

As we expand our Advocates Extraordinaire™ program, a project, which will allow hardcore advocates to effectively participating in specific grass roots initiatives that are crucially needed in our community. We invite you to be part of this grass roots initiative.

Currently, we are in the initial phase, which is to recruit individuals to participate. The number one requirement we have is that the individual be able to provide a more focused level of involvement towards any of the initiatives we will present and put in place.

The program is flexible in the extent that we understand that neuroendocrineimmune disorders wax & wane, therefore small teams will be established to get tasks accomplished. We hope to do this in a very simple format and as we go along everyone input will be asked and required. I am sure some tweaking will be necessary.

The number one priority of the Advocates Extraordinaire™ program is to establish Neuroendocrineimmune Disorders Research Centers in several geographical locations in the U.S. It will require a huge effort from our overall community along with focus, sheer resilience and dedication.

On phase one we will run concurrently 10 single question polls. The results of these polls will be taken to officials of the Centers for Disease & Prevention (CDC), to Congress, to the Department of Health and Human Services (DHHS), to Social Security Administration, and to other interested parties & government officials in the state and local levels.

As we released the first poll yesterday June 4, 2009, we ask you to assist us in spreading the word by using the text below:

"For two and half decades the CDC direction regarding the CFS research program, which includes prevention, course of treatment, medical provider education and public information has been controversial, divisive and spotty at best.

P.A.N.D.O.R.A.- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc, a charitable (501 c 3) organization advocating for the chronically ill and an organization that I support, is launching a nationwide & international advocacy alliance with strategical partners around the world, for the main purpose for the establishment of Neuroendocrineimmune Disorders Research Centers in the U.S. and overseas. This is the first poll of a proposed 10 single poll questions. I ask that you participate in the poll link below.

P.A.N.D.O.R.A. along with the strategical partners' alliance will then take the answer results to the CDC, to Congress, to the National Institute of Health (NIH), to the Social Security Administration, to the Department of Health and Human Services (DHHS) officials and other interested parties. So please join me, and our voices will be stronger.

ONE VOICE, ONE COMMUNITY, ONE CAUSE!"

Click on the link below to answer the survey.
http://survey.constantcontact.com/poll/a07e2j0j8jpfvjw46k4/start.html

Thank you for helping P.A.N.D.O.R.A. and I to bring a change and a new direction, so crucially needed in the neuroendocrineimmune disorders community of suffering. You are making a difference! "

Next you sign on the bottom of the letter or e-mail and that is it, you have already take the first step in becoming an Advocate Extraordinaire™! The next step is to send me an e-mail at msilverman@pandoranet.info and sign up for the project mentioned here – The Neuroendocrineimmune Disorders Research Center (Institutes).

Don’t forget to participate in the poll!

In Good Health and In Beauty,

Marly (Marla) C. Silverman
Founder
P.A.N.D.O.R.A
www.pandoranet.info

Built on Hope ★ Strong on Advocacy ★ Finding a Cure through Research