P.A.N.D.O.R.A. -  Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy, Inc.

MAY 2009
MAY 12 WAS NATIONAL NEUROENDOCRINEIMMUNE DISORDERS AWARENESS DAY.  THE CELEBRATION CONTINUES IN SOUTH FLORIDA WITH PANDORA'S WALK IN MY SHOES 
WALKATHON MAY 23rd!

In This Issue
:: Who? Me, Walk?
:: Video Chat Room
:: May Empowerment Meeting
:: Scare for ProHealth
:: A Personal Experience With CA Fire
:: Therapy Dogs
:: Dinner and a Movie
EDITORIAL
CDC Five-Year Strategic Plan for CFS Program
P.A.N.D.O.R.A.'s Written Input to the CDC

Prepared by
K. J. Friedman, PhD, Director, Public Policy
Marly C. Silverman, Founder and Public Policy and Community Advisor
Rebecca Artman, Public Policy and Community Advisor 
 
The purpose of the public meeting was to solicit input from interested parties on issues that the Center on Disease Control (CDC) will consider as it develops a 5-year strategic plan for its chronic fatigue syndrome (CFS) research program. Input was sought only on the CFS strategic research plan, not on CDC's overall CFS program. Because the CDC is one of many institutions conducting research on CFS, the strategic plan will only address research that is within the CDC's purview.
 
To read the entire report, click here

raffle ticketsA BIG THANK YOU TO OUR SPONSORS, GRAND PRIZE AND RAFFLE PRIZE DONORS FOR THE

WALK IN MY SHOES(tm) 

OUR MAIN SPONSORS TO DATE:
  mason    

 

          

             


The Center for Individual and Group Counseling, PA
     
Alan W.Smith Masonry
 
  Julio & Sandy Bermeo - Capitol Hill
 
 Alan W.Smith Masonry

 Julio & Sandy Bermeo - Capitol Hill

 water
 
Julio & Sandy Bermeo - Capitol Hill
 
Broward County Logo
 
Goodie Bags Donated by
State Farm, Miami

Special Thanks to:
Governor Charlie Christ, Autographed Photo

City Proclamation Day Letter Pembroke Pines
Mayor Frank C. Ortis, Proclamation Letter honoring our Walkathon and  Neuroendocrineimmune Disorders Awareness Day

Special Thanks
ABC Built-in Closets, Perry Birman, Sunrise, Renovated shelves in office

Zen Remedy Massage, West Palm Beach, Donating 5% of profits during the months of May and June to PANDORA

RAFFLES & GRAND PRIZE
:
1 set of coach travel certificates valid for travel in the continental United States on AIR TRAN AIRWAYS.  These certificates total value is $1,000.00 ($500.00 per passenger). You must be present to win the grand prize, but not the other exciting raffle prizes.
  
The Center for Massage Therapy, Cooper City, Gift card for 1 hour massage
Costco - Pembroke Pines, Lunch sponsor
CURVES, Pembroke Pines, 3-month membership
Danik Full Service Med Spa, Gift Certificate
Hilton Garden Inn Miramar, complimentary weekend stay
Joey the Baker, Pembroke Pines, Gift Certificate
Robbie Keffer, BP gas gift card
Kneaded Therapy, Inc., Ft. Lauderdale, Gift Card for free massage to walkers
 1 - 30 minute massage treatment

Lady of America, Pembroke Pines, 1 FREE year membership
OUTBACK Steakhouse, Pembroke Pines, Gift Card
WYNDHAM Miami Airport Hotel & Executive Meeting Center
Complimentary 3-day, 2-night stay & dinner for 2



For directions to the park, click here http://www.broward.org/parks/cbmap.htm

DON'T MISS THE WALKATHON TOMORROW! Even if you cannot walk, it will be loads of fun. Bring your whole family! There will be a DJ on board and a face painter for the kids. Amazing raffle prizes are waiting to be won!

 IF YOU CAN'T COME FOR THE WALK, JOIN US AT 11:30 FOR LUNCH!
WHO? ME, WALK? 
 
by Yvette Taylor 
 
That's what I immediately thought when Marly started talking about a walkathon. Right after that quick reaction, I realized that some of us can walk . . . I walk my dog on most days, but I don't think I can't walk a mile. (Just kidding with the picture! Barbie June is a 20-pound BAD Bichon.) 
 
VIDEO CHAT ROOM 

communication 
P.A.N.D.O.R.A is the number one strategical partner of ME-CFScommunity.com. 

Dan Moricoli just announced to us that A video chat room is available for members of the P.A.N.D.O.R.A. group on ME-CFS/Community.com website.
The video chat room will allow you to see and hear any member, anywhere in the world in real time.

All you need is a video cam with a microphone attached to your computer, which can be purchased for as little as $29!

There is also a video chat room available for the general membership as well. Make sure you sign up for the P.A.N.D.O.R.A. group, when you join ME-CFScommunity.com.

P.A.N.D.O.R.A. and Dr. Nancy Klimas are sponsoring two seminars hosted by ME-CFSCommunity.com. They will be held on June 13 and 14 in Miami and West Palm Beach. The seminars presenter is Fern Silver, a nationally known and highly successful motivational speaker. Both seminars are titled "Breaking Free of the Confines of Chronic Illness." Visit the web site page for complete information about this and other events being sponsored by PANDORA.
 
May 12  Awareness Day  Empowerment Meeting: Standing Room Only!


Karen Sacks  Our meeting at Karen Sachs' office was so well-attended that we had to split into two groups. One group saw the CFS/ME pre-release of the documentary "Invisible." The other half spent an hour with Karen, who is a therapist and board member and has fibro. She gave us much good advice. Then the groups switched. Thanks to Karen for letting us swarm around in her office and providing free therapy!

Julio & Sandy Bermeo - Capitol Hill

There will be no meetings in June, July, and August. See you in September! 

Click here for Group Meetings in Florida and other states

 PANDORA;S RECYCLING FUND RAISER
PANDORA's Green Project continues during the walkathon tomorrow. Several recycle bins will be on hand for donated cell phones, ink toners, and ink cartridges. Bring them with you to
C. B. Smith Park! 

Newsletter Volunteer Staff 
 
Marly Silverman
Publisher
 
Yvette Taylor
Editor and Staff Writer
 
Marla Schwartz
Staff Writer

WILD FIRES AFFECT OUR FRIENDS AT PROHEALTH!

The ProHealth office and many of its employees were evacuated due to the devastating fires in Santa Barbara, CA. Thankfully, they were spared the horrifying effects of the fire, but sent us some amazing pictures of how close the disaster came. The first picture shows the fire very near their office. The second is the fire close by at night. We are so grateful that the ProHealth Team is safe and again taking orders for their products.
 
 
fire1
 

Editor's Note: This article is a beautifully written piece about the recent California fire, by John Herd, who has had CFS/ME for 20 years and is a great friend to PANDORA.-- Y.T.

EXPERIENCING THE SANTA BARBARA JESUSITA FIRE
May 2009

By John Herd
 
Coming from the East Coast, nothing could have prepared me for experiencing a Western forest fire. When it comes to forest fires in the desert climate dense scrub, "contained" is a misnomer. The back country forest fires aren't contained, at least by man. What happens depends largely on the weather, terrain, and pure luck.

 
 
CONDO schnauzerASSOCIATION NEEDS TO FIND COMPASSION

Bonnie Meyers, an active PANDORA volunteer, is fighting to keep her therapy dog. Although she lives is a no pet building, she believes that therapy dogs should be as welcome as service dogs. Bonnie saved her schnauzer Murphy from the Ft. Lauderdale pound. He was emaciated and full of fleas. After bringing him back to good health, Bonnie enrolled him in a group called Therapy Dogs International, and Murphy was certified as a therapy dog. He had to pass a stringent test to receive his certification. Murphy has been a great comfort for Bonnie, who has CFS/ME and FMS. Plus, he makes her walk. We all need to, but don't want to get up and do it. Murphy gets Bonnie up and out!  Her condo association has sent her harassing letters ordering the dog to go, despite a letter from her doctor about the benefits of therapy dogs for people with neuroendocrineimmune disorders.
 
Because service dogs are allowed to live in condos, therapy dogs should as well. Bonnie still has her Murphy but is battling to keep him. Bonnie noted, "I think it is despicable the way they treat the owners and their wonderful friends who do wonders for their illnesses." Good luck Bonnie. Murphy has to stay! 
DINNER AND A MOVIE
 
Our fundraiser dinner will be at Gilbert's 17th Street Grill  on June 8th at 5:00 p.m.  The pre-release of the documentary Invisible will be shown.