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NEIDs May Advocacy is Going Strong
May 2012

PANDORA is Fueling Advocacy 

Advocates Collage  
PANDORA is honoring 20 special advocates with $100 Citgo fuel cards to help "fuel" advocacy as part of our Advocates Extraordinaire™ program. We know many patients and their families make great personal sacrifices to create improvements for NEI disease government policy, research funding and care. We hope these fuel cards will help defray the costs and encourage them to keep on.  
Take a look at the three pages of advocates and the amazing, creative and inspirational work they have done recently. Both collectively and individually, together or independently, they are making a difference. If you know one of them, or if you know anyone else who is extending themselves for their fellow patients, please take time to say "Thank You."  

$20 Gets You a Chance for a One-Week's Stay in Resort in Orlando

In PANDORA's 2012 Advocacy Raffle, just $20 gets you a chance to win 7 days at Westgate Lake & Resorts Spa in Orlando, Florida. Money raised through the raffle will go to PANDORA and the Speak Up About ME project. Time is ticking, so hurry to purchase your ticket now. 

Jalinske is Punching Rock for PANDORA

 Ed Jalinske
Entrepreneur Ed Jalinske has chosen to "punch rocks," that is remove barriers, for PANDORA. He will be advising us, helping us with access to resources and representing PANDORA to state and federal elected officials. You will notice that the company's office is in Washington, D.C.

"Because of the dynamic people behind the organization and the unrelenting passion with which PANDORA members approach this noble and often very personal cause...PANDORA is unique in that regard," said Ed. "My feelings have not wavered since I first became involved with PANDORA in 2002. I am honored and humbled to be part of PANDORA in the role of  Director and Senior Policy Advisor."


We are very pleased that someone with such
high credentials is willing to give us a helping hand. Please leave a comment to Ed on the Punch Rock Capital Facebook page, thanking him for donating his services. 


We hope that, as their slogan says, that they will find some value for NEIDs patients by looking "off the beaten path." 

NeedyMeds and PANDORA Helps Patients Find Affordable Meds    


NeedyMeds Logo PANDORA and NeedyMeds have joined together to provide information to patients with NEI diseases on what is available for those needing low-cost medications. Discount cards, drug company assistance programs and more can be found on the NeedyMeds website. On May 2, PANDORA and NeedyMeds hosted a webinar telling how to maneuver through their website to find what is needed:   

NeedyMeds and PANDORA Webinar 
NeedyMeds and PANDORA Webinar

So far, about 200 people have viewed the webinar. Please give us feedback on YouTube letting us know if this was helpful to you.

Recent PANDORA Advocacy Letters to Government Officials 


In the last few weeks, PANDORA sent two letters to government agencies asking for appropriate attention to NEIDs.  


One letter was sent to the FDA, asking them to call a stakeholder's meeting to find ways for quicker progress on finding effective medication for ME/CFS patients.  


The other letter was sent to the National Center for Health Statistics Director asking him to give an answer to the Coalition 4 ME/CFS proposal to reclassify CFS into the neurological category of the ICD-10-CM, the diagnostic code manual for clinical use in the U.S. We were told a decision would be handed down by the last day in December, yet we have not heard anything. Although the publication of the ICD-10-CM has been delayed, the process for proposals and schedule for hearing those proposals are continuing.

CFSAC Meeting Set -  

Here's What You Can Do  

The CFS Advisory Committee meeting has been set for June 13 & 14 at the Department of Health and Human Services Building in Washington, D.C. Apparently, they will be providing live Internet videostreaming this year. They have not yet published in the Federal Register that they are accepting requests for public input / testimony. We will let you know on our Facebook page as soon as we hear they are.
 Denise Lope
This year, Denise Lopez-Majano is managing the PANDORA-sponsored Empty Chair Project and Speak Up About Me project. Please follow the links to see how you can participate.

We do not know yet who will be filling the four empty seats left by outgoing members. However, we are encouraged by Dr. Nancy Lee's statement on May 12 that the government agencies are working to find solutions. This is the first time in our ten years of service that the CFSAC administrator has released a message like this.  

PANDORA Gives $4,000  

Grant for Video and T.V. Show  

 Llewellyn King
Respected Washington reporter Llewellyn King took an interest in NEI diseases when his former colleague and long-time friend, Deborah Waroff, explained her limitations due to ME/CFS.

He wrote a blog on the disease and received the most comments he ever had as a journalist. Touched by the patient stories, words of appreciation and pleas for help, he then did a segment about the disease on his show. Then another blog. And another. All of this led to his doing 24 ME/CFS Alert videos with Deborah.

He told us he wants to do an hour-long T.V. show on the disease. Of course, we want this too. We understand the cost of these videos and producing a television show. With an initial donation from ProHealth and matching funds from PANDORA, we are funding our Media Awareness Project. We are working to obtain additional funding for this worthwhile project. Please contact us if you would like to donate toward this effort.

See some episodes of his show.
See what stations air the show.
See his latest blog about ME/CFS.
See the April 2011 show on CFS.
See the ME/CFS Alert videos.
CFSAC Testimony
Wins State Writing Contest

Our own Tina Tidmore won first place in a state competition for November 2011 CFS Advisory Committee public testimonies she wrote on behalf of two of our Advocates Extraordinaires™.
She entered them into the Alabama Media Professionals 2012 Communications Contest in the Speech Writing category, Tina's Award 2012and the entry will now move on to the national competition of the National Federation of Press Women.

This is another way to create outstanding  awareness of NEIDs. We are so proud of Tina, and we appreciate her dedication and professionalism. We know many, like Tina, have limitations. Some have found they can write, do arts or crafts, make videos or other passive activities. We encourage all patients to find their passion and then enter them in contests.

But it gets better, Tina also won first place for editing the city of Clay website, for a series of articles she wrote for her local newspaper on businesses recovering from the Great Recession, and for another article she wrote for her local newspaper. All of these will be in the national competition. As a result of taking these first place awards and a second place and third place award, Tina earned enough overall points to win the Sweepstakes Award and a $50 check.

Tina's current project is developing PANDORA's new website. Once completed, we hope to submit the site in a future contest. Join us in congratulating Tina and wishing her continued success. Drop us a note via email or on our Facebook or Twitter page.  
APF Dissolves

We are sorry to have to pass on the news that the American Pain Foundation dissolved on May 3, 2012. We know this must have been a very difficult decision for the board to make. We participated in some of their advocacy training, allowing us to teach others how to be effective advocates. We will miss them.

Their Facebook page is full of people expressing their concerns about losing their voice with APF no longer speaking for those in chronic pain. To the best of our abilities and with the resources we are given, we will continue to speak for those who suffer from chronic pain from fibromyalgia and other NEI diseases. 

In This Issue
PANDORA is Fueling Advocacy
2012 Advocacy Raffle
Jalinske is Punching Rock for PANDORA
Webinar from NeedyMeds
Recent PANDORA Advocacy Letters
CFSAC Meeting Date Announced
PANDORA Grant to Llewellyn King
CFSAC Testimony Wins Award
APF Dissolves
Celebrating 10 Years
of PANDORA Advocacy 

The year was 2002, and Marly Silverman envisioned an organization that would improve the quality of life of NeuroEndocrineImmune disease patients. After gaining inspiration in a dream, PANDORA was born.


Since then, much has changed for the good. Take a look at some of the grants we received and gave in the last few years. 

Please join us in celebrating  

10 years of PANDORA Advocacy. 

Coming Up

We have a new website!

Pandora new website

All it Takes is a Signature

We know that many people want to make a difference and don't know how, given the limitations of their circumstances. A simple way is by signing a petition:

Donate to PANDORA
 Through EBAY Giving  
ebayEbay Giving Works is a special program where a percentage of sales can be donated to a charity organization. We want to thank several merchants, who have already supported and continue to support us. Here are the instructions. 
PANDORA Mentioned on Canadian Radio Station 
Geoff Langhorne, an ME/CFS patient and radio host in Hamilton, Ontario; knows he can count on PANDORA to help him when he wants to do a show on the disease. He has interviewed Tina Tidmore and Dr. Kenneth Friedman in the past.

About a month ago, he called again. This time, Tina helped him connect with Dr. Alison Bested in Toronto and Kati Debalic, a Canadian patient who is now blogging about her experiences with experimental Rituximab treatments.

Listen to this very interesting discussion of ME/CFS in Canada.
(Go to "Programming"
 and then click on "disRespect"
shown on Thursday at noon.
Then, click on the May 5, 2012
show and click on
"Download Program.")

Author and
Long-time Patient Advocate Speak about their ME/CFS Experience 
The CFIDS Association of America recorded an interview with Roger King, an author who came down with ME/CFS after moving from England. His latest book is Love and Fatigue in America.

The recording also has an interview with Wilhelmina Jenkins, another ME/CFS patient and friend of PANDORA.
A Conversation with Roger King and Wilhelmina Jenkins
A Conversation with Roger King and Wilhelmina Jenkins

Remember Tom Started May 12 Awareness Day
We want to give special acknowledgment to Tom Hennessey, Jr. for his decades of advocacy. Tom was the one who Tom Hennesseycame up with the idea that May 12 should be the international awareness day
for ME/CFS and Fibromyalgia.

We have given Tom some Citgo fuel cards as part of our Fueling Advocacy grants. See our summary of Tom's activities in the last year.
Agent for Change
Marly's Blog
Agent for Change

Marly 2011

Research News
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In Memoriam

in Memoriam

In memorium
Click on image to join the Facebook In Memoriam Page
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PANDORA's Mission

Through the following efforts, PANDORA seeks to alleviate the suffering caused by NeuroEndocrineImmune diseases:

  • Advocacy for improving patient quality of life
  • Community awareness projects
  • Patient education programs and conferences
  • Physician education programs
  • Research grants
  • Partnerships with other patient organizations
  • Collaborations with academia and the biotech industry

PANDORA advocates for and works toward establishing centers of excellence for research, clinical care, physician education and government services assistance for NEIDs patients and their families.

Join our organization by signing up for the newsletter here.

Phone: 954-783-

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