Newsletter November 2006

11/16/2006 From Marly (Marla) Silverman P.A.N.D.O.R.A.'s Founder

Dear Friends,

Well-come© to "What's new" at P.A.N.D.O.R.A.!

Before I leave for a deserved rest from P.A.N.D.O.R.A., I am pleased to say that these past few days have been exciting. On top of the amazing press exposure we are receiving, I am also pleased to inform that Yvette Taylor, one of our dedicated board members and our Editor, will be featured in the section of the POMPANO FORUM, a local community newspaper, and share her personal story as a fibromyalgia thriver. Yvette truly is a success story! The story is expected to be published on November 23, (Thanksgiving Day).

UPDATE: Hi Everyone, please note that the the new date for the TELEMUNDO 51 broadcast of the CFS story below is now NOVEMBER 24, 2006, same time from 5:00 pm to 6:00 pm. The network changed from November 17, 2004, because they felt that the show deserved a better time slot, to put "this story as a hopeful expression that there are people concerned about other people with CFS", So it will be right after Thanksgiving Day as folks are home for the holidays.

So here is the new information:Please don't miss this CFS television story. Even if you don't "habla" (speak) Spanish you will get the jest of the message!

• November 24, 2006, from 5:00 pm to 6:00 pm, TELEMUNDO 51, one of the local Spanish stations serving the Hispanic community in South Florida and their national counterparts throughout the U.S. will broadcast a special on CFS on the show titled "AL ROJO VIVO con Maria Celeste".

The show is broadcasted nationally in the US, but it can also be seen worldwide through cable in Europe, Middle East and the Scandinavian countries. This is an amazing opportunity to share with the world the plight of CFS individuals and their families, as well as the mission of P.A.N.D.O.R.A.

Dr. Nancy Klimas, Rosa Berrocal, a CFS patient and I were interviewed for the CFS story. Don't miss it! "AL ROJO VIVO con Maria Celeste... Es la revista noticiosa en español con mayor teleaudiencia en todo el contiente americano". The contact e-mail for the show is alrojovivo@nbcuni.com.  Please send them a note of thanks to the show's producers.  The reporter of the CFS story is Marcelo Urquidi. Please mention his name in your e-mails to TELEMUNDO.

EXTRA! EXTRA! Read all about it in your neighborhood Sun-Sentinel paper!

If you live in Broward and Palm Beach counties, please keep your eyes open for the South Florida Sun-Sentinel newspaper special feature on CFS that will be published in the next 2-4 days, maybe even later.  The article is written by Nancy McVicar, the Sun-Sentinel Health Writer and a winner of the Francis Devore Award for Public Service. The photographer is Robert Mayer, winner of several photography awards including the Best of Photo Journalism Award 2006.  Dr. Mary Anne Fletcher, Dr. Nancy Klimas, Irwin Auster and I, were interviewed and photographed for the article. To send a note of thanks to Nancy McVicar click here.

The long awaited article describing CFS or "SFC- Sindrome de Fatiga Cronica", titled "Un mal que destruye la vida laboral" - The illness that destroys your "working life" (ability to work), by staff writer Alejandra Chaparro, from the El Nuevo Herald", the Spanish edition for The Miami Herald is in THE FRONT PAGE OF THE newspaper. The article only without the pictures can be read at the El Nuevo Herald web site. 

Whether you speak Spanish or not, please send a warm e-mail to Alejandra Chaparro, thanking her for helping to create awareness for "SFC- Sindrome de Fatiga Cronica".  I want to thank Rosa Berrocal, one of P.A.N.D.O.R.A.'s members who was interviewed for this piece, for her contribution to the article, as well as the other members whose interview were not used for the article.

As other local media outlets publish stories that create awareness for neuroendocrineimmune disorders, we will let you know as soon as possible. So keep checking your e-mail inbox for the latest news about P.A.N.D.O.R.A.'S efforts and or click here for the latest media exposure in South Florida and beyond.

The 8th International IACFS Conference in right around the corner from January 10-14, 2007. Take advantage of the early registration discounts and register now !

If you would like to share a room with another conferee please send an e-mail to contact@pandoranet.info .  We will connect you with potential roommates based on the inquiries we receive.

If you receive a letter, flyer, e-mail or any other material from P.A.N.D.O.R.A. (and/or from the IACFS), asking you for a financial donation to offset the expenses of bringing to you one of the best IACFS conferences, please donate generously. to allow us to continue our mission. Here at P.A.N.D.O.R.A., it does not matter the size of your donation, what it matters is that you are supporting an organization that has a unique way in representing the neuroendocrineimmune disorders community. Through your donation you will become "an agent for change".

If you specifically donate for the 2007 Advocate Extraordinaire!© program, you will know that your contribution will allow an advocate of lesser means the opportunity to participate in an educational event that it is a first in the CFS community. 

The opportunities for advocates, to network with physicians, nurses, patients, caregivers, and for companies that support our community through their products and services will be PRICELESS. It is a prime opportunity to meet colleagues from around the world, to forge long-lasting friendships and relationships, and brain storm advocacy grass roots initiatives that will unite our community and will bring long lasting results.

Bring your entire family to Florida. Let them build sand castles on our warm beaches while you spend time at the conference. Come earlier, stay a little longer. If you have any questions on fun places to visit please e-mail me.  I hope in the next month to post a list of tourist attractions in our area on our web site.

Don't forget to bring sun-block, a glamorous hat, and dark sunglasses! Dr. Nancy Klimas, President of the IACFS, ( who is also a member of our board of directors), and I are ready to welcome you to our home town in sunny South Florida.

I wish you all a Happy and Blessed Thanksgiving! See you at the conference!

In Good Health and In Beauty,

Marly C. Silverman

Founder

P.A.N.D.O.R.A., Inc.

REMINDERS

Let me remind you also that hurricane season is still here. So far, we haven't had a major storm landing in Florida, or in the Gulf and Carolina areas. It ends November 20, 2006. Make sure your hurricane stock of batteries, shelf food, important documents, are all in a safe place if an emergency happens. In this newsletter we will direct you to the web site of the state program titled "My Safe Florida Home.” You may qualify for this important program. For information on preparing an emergency preparedness kit, visit the FEMA web site.

Please support our nationwide efforts to establish the Florida Neuroendocrineimmune Center of Excellence at the helm of Dr. Nancy Klimas. Visit our web site Advocacy page for the Action Alert, which was highlighted in our July 2006 newsletter. Our partner in this endeavor, The American Pain Foundation (APF), has now posted the action alert on their web site as well. Act on the action alert today and send your message to our Florida U.S. Senators and ask for their continuing support for the center of excellence for FY 2008: since funding for FY 2007 did not come through. Share your personal story when contacting your congressional leaders. By being a strong advocate, you are a part of the solution!

We are working on gradually adding names to our wellness directory on our web site. If you have the name of a physician, massage therapist, rehab specialist, and any other allied health care specialist who has made a difference in your life please, send me an e-mail telling me why you think the professional should be on our wellness directory. It is only through a referral (word of mouth) from our members that we are able to include names of a health care provider on our wellness directory.

If you have not signed up for the newsletter here is the opportunity. By subscribing to our newsletter is how you become a member of our family. The newsletter provides updates on how Rebecca Artman,has been instrumental on lining up speakers and volunteering hundreds of hours to bring you one of the best IACFS patient conferences and one in which P.A.N.D.O.R.A. is so proudly involved.