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
February 2010
February 2010
Advocates Extraordinaire™: Show me the love!

As an all-volunteer organization, P.A.N.D.O.R.A. owes much of its accomplishments to the help and dedication of our Advocates Extraordinaire. To celebrate Valentine's Day, we want to take this special time to show our AE's some love!

Here are just some of them:

AE Denise Lopez Majano SMALLDenise Lopez-Majano, mother of two children with CFS/FM, shown here at the CFSAC meeting in Washington D.C. last October. (Click on image to watch Denise on YouTube)
Advocates Extraordinaireon Social Media

Social Media Mavens: Mary Ann Parker
Social media offers great communication tools for the chronic pain community, but keeping up with posts and "tweets" can be time consuming. Fortunately, our "voices" behind our social media efforts on Facebook and Twitter, have been keeping our community lively and abuzz with news.             

Special thanks to Mary Ann Parker (pictured ), Jill Serrato and Susan Cue-Sugman.

Thank you for all that you do!
Become an Advocate Extraordinaire!

AE logoThe Advocates Extraordinaire™ program is a patient community project of P.A.N.D.O.R.A. and the Lanford Foundation-Lifelyme™ which seeks to enhance public awareness, patient and medical educational efforts, as well as long-term fund raising initiatives for the NEI Center.

AEs from around the world can use the AE logo on personal business cards, Facebook pages, on e-mail signatures and/or when corresponding to government and health officials in their respective countries.

To apply as an Advocates Extraordinaire™, send an email to Marly Silverman.

Racing for Awareness
Mitch Pagerey Intersport photoCelebrity race car driver Mitch Pagerey, who drove car No. 23 at the 2010 Rolex at Daytona last January 31, has thrown his support behind P.A.N.D.O.R.A. and the NEI Center.  Watch for more upcoming news of Mitch and his car, which will soon be sporting the P.A.N.D.O.R.A. logo.

Go Mitch!
Ryan Baldwin Reunited with family!
Ryan BaldwinThroughout 2009, P.A.N.D.O.R.A. along with 23 other patient advocacy non-profit organizations, wrote letters and petitioned North Carolina Governor Bev Perdue, NC State Legislators and NC Federal legislators on behalf of 16-year-old CFS patient Ryan Baldwin and his family. The county had removed Ryan from his family, alleging that his parents have not provided him with "mental health care and access to a pediatrician".

Last Thanksgiving, Ryan was finally reunited with his family!

We are grateful to Pat Fero, from the Wisconsin CFS-ME Association for calling our attention to the plight of this courageous family.

XMRV Lectures draw large audiences

On Jan.22, Prohealth and the HHV6 foundation hosted a lecture by Dr. Judy Mikovits on the XMRV retrovirus. Over 3,000 viewers watched the live video presentation.
Mikovitz on ProHealth
Click here or on the image (right) to view Dr. Mikovits' presentation.

Dr. David S. Bell
Another lecture on XMRV was hosted in southern California on January 15 by the Barborka Family featuring Dr. David S. Bell, a leading expert and one of the first medical professionals to correctly diagnose CFS in the U.S.

Dr. Bell XMRV lecture
We would like to thank everybody involved for making all information publicly available
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™.
P.A.N.D.O.R.A.'s Mission

To be one strong voice for many© . . .
  • 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
Profile: Advocates Extraordinaire
Become an Advocates Extraordinaire
Racing for Awareness
Ryan Baldwin comes home
XMRV: Dr. Mikovitz
XMRV: Dr. Bell
NEI Center: Our Mission Statement
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: February 9, 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.

"Shout out to our social media mavens!"
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

In Memoriam


in Memoriam

In memorium
Click on image to join the Facebook Fans Page
facebook logo
YouTube logo
Twitter logo
Contact Information

Join Our Mailing List