P.A.N.D.O.R.A. -  Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy, Inc.
P.A.N.D.O.R.A.'s & Lifelyme™ Newsletter
January 2010
January 2010
Welcome back, Rebecca!

Rebecca Artman 2010Rebeccca Artman, one of the founding board members of P.A.N.D.O.RA., has returned to our executive board as Vice President, Public Policy, after a four year hiatus, during which time she served on the CFSAC (Chronic Fatigue Syndrome Advisory Committee).

While serving in the CFSAC, Rebecca served as a community advisor to our board. We welcome Rebecca's expertise and experience as an international advocate and her passion for helping patient advocacy groups to work together in accomplishing common goals.
NEI Center: Our mission statement

The NeuroEndocrineImmune (NEI) Center™ is a community patient-driven grass roots project of P.A.N.D.O.R.A, in partnership with the Lanford Foundation-Lifelyme, Inc.

 NEI logo 2010

It is the first research center to incorporate biomedical engineering scientific and clinical research, and integrating patient computer aided disease diagnosis and treatment (CADDT) specifically designed for multi-system illnesses and complex diseases

To read the entire mission statement and for more information, go to
 P.A.N.D.O.R.A.'s Facebook Cause Page for the NeuroEndocrineImmune (NEI) Center™.
NEI Center Resolution Awaits Passage from NJ State Senate

Senate Resolution (SR) 133, encouraging the establishment of the first research center in the state of New Jersey dedicated to understanding and treating chronic neuroendocrineimmune (NEI) illnesses which includes Chronic Fatigue Syndrome and Fibromyalgia, is currently awaiting passage in the New Jersey State Senate. A similar resolution (AR 202) recently passed the New Jersey State Assembly.

Sponsored by Senator Christopher "Kip" Bateman and Senator Loretta Weinberg, SR 133 cites studies that an estimated 20 million American adults and children suffer with NEIDs. The economic impact and loss of worker productivity in the United States due to CFS/ME, alone, is estimated to be over $9 billion per year. Chronic illness represents 75% of all health care costs in the U.S.

To contact the Senators and ask them to support SR 133:


Senator Christopher "Kip" Bateman Senator Bateman

36 East Main St.
Somerville, NJ 08876
Email: senbateman@njleg.org
Phone: 908-526-3600
Fax: 908-707-4578


Senator Loretta WeinbergSenator Weinberg


545 Cedar Lane

Teaneck, NJ 07666

Email: senweinberg@njleg.org
Phone: 201-928-0100
Fax: 201-928-0406

XMRV Update: CFS/ME & You

Last October, a team of researchers from the Whittemore-Peterson Institute in Reno, NV made worldwide headlines when they reported a link between Chronic Fatigue Syndrome and the infectious gammaretrovirus or XMRV. YouTube Dr Klimas XMRV

To help further educate our members and the community on this major breakthrough,
P.A.N.D.O.R.A. sponsored a lecture and slide presentation by Dr Nancy Klimas: XMRV CFS/ME & You, a compelling and comprehensive review of the disease, the XMRV virus discussed in detail and what lies ahead. Over 150 people attended the 2-hour event.

(click on image to view video)
XMRV Lecture by Dr. David S. Bell

Lori Lawhead, a member of the NEI Center team, helped organize a lecture in Batavia, NY on the XMRV retrovirus last December featuring David S. Bell, M.D., a leading expert and pioneer in treating Chronic Fatigue Syndrome.

The event generated positive media coverage, including The Journal Register and The Daily News.

Dr. Bell will be presenting a similar lecture in California on Friday, Jan. 15, presented by the Barborka Family:

David Bell MD


"XMRV retrovirus and Chronic Fatigue Syndrome, ME (Myalgic Encephalomyelitis), Fibromyalgia and aggressive prostate cancer"

Friday, January 15, 2010

6:30 pm - 7:30 pm

LDS Church Building

9801 Newport Blvd.

                             Santa Ana, CA 92705

Contact: 714-970-2268


This lecture is free & open to the public - directions

Feature Profile: Jessica Barto
Jessica Barto
On October 10th, radio personality Dave Ryan at KDWB in Minneapolis put a comment on his Twitter account stating "people with Fibromyalgia should be shot."

Fibromyalgia patient-turned-advocate Jessica Barto harnessed the power of social media to respond when Ryan refused her repeated requests to recant or apologize for his remarks.

Jessica created a Cause page on Facebook - "Fibromyalgia Sufferers Against Dave Ryan" which got over 1,400 fans in just over 24 hours.
Several fans, including Jen Reynolds of Tempe, AZ posted a video response on YouTube.

YouTube Jessica Barto
(click on image to watch video)
Our Mission

To be one strong voice for manyŠ . . .
  • Creating and Raising Community Awareness 
  • Advocating for Quality of Life Issues
  • Providing Support and Educational Resources
  • Establishing Partnerships in our worldwide community
  • Supporting Scientific Research
  • Encouraging Empowerment groups
  • Organizing Educational Medical & Patient Conferences

These goals will assist patients with neuroendocrineimmune disorders and their families in leading productive and fulfilling lives.

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

1 Voice - 1 Community - 1 Cause™
In This Issue
Rebecca Artman returns to board
NEI Center: Our Mission Statement
NEI Center: SR 133 awaits passage
XMRV Update: Dr. Klimas
XMRV Upcoming Lecture: Dr. David S. Bell
Feature Profile: Jessica Barto
Our Mission
FT. Lauderdale Pompano Beach
Neuroendocrineimmune Disorders Empowerment Group

The Center for Independent Living of Broward

4800 N.State Road Bldg. F Suite 102
Lauderdale Lakes, Florida 33319

ALWAYS held the 2nd Tuesday of each month

Next meeting: January 12, 2010. 1:30 pm-2:30 p.m 2:30 pm -3:00 pm

Click here for other S.Florida and nationwide support groups.

Agent for Change
Marly's Blog

Marly Silverman, Founder, P.A.N.D.O.R.A.

In Memoriam:

Jack DeLuca

Jack DeLuca's passing should not be in vain. P.A.N.D.O.R.A. founder, Marly Silverman gives her personal take on another great loss to our community of suffering, in her blog "One Agent for Change."


in Memoriam

In memorium
Click on image to join the Facebook Fans Page
Don't Dump It! Donate It!

.O.R.A. is going "Green"!

Did you ever wonder what to do with your old cell phones? How about your ink toners and ink cartridges?

them to P.A.N.D.O.R.A.!

Through the assistance of Dade Recycling, Miami, Florida, we are participating in a fundraiser
recycling program that will benefit our environment by reducing some of the excessive and toxic waste found in our landfills.


Pro-Cleaners & Alterations
914 S. Pompano Parkway
Pompano Beach
P.A.N.D.O.R.A., Inc. (Business Office)
255 Alhambra Circle, Suite 715
Coral Gables
Volunteer Help Line: 954-783-6771
Center for Individual & Group Counseling
7301 W. Palmetto Park Rd., Suite 205A
Boca Raton
Drop off Hours: T, W, Th 10am-5pm

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