P.A.N.D.O.R.A. -  Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy, Inc.
 Media Contact:
Corin Ramos, APR
Statement from P.A.N.D.O.R.A.
The case of Ryan Baldwin is an ominous wake-up call of the need for awareness of
Pediatric Chronic Fatigue Syndrome

By Marly Silverman
"Dangerous lack of understanding"

Nelda Holder's article on young Ryan Baldwin and his family ("Home for good? Black Mountain couple regains custody of son" Mountain Express 2/24/2010) shines a long-anticipated and much needed spotlight on more research, proper diagnosis and treatment options for children and young adults under the age of 18 stricken with Chronic Fatigue Syndrome (CFS). Ryan Baldwin cover
The sad case of Ryan Baldwin and his family underscores the dangerous lack of understanding as to the serious nature and special care of children with Chronic Fatigue Syndrome, as well as current objective medical research on the illness.

Clearly, as was the case of the Baldwins, government officials need better understanding and awareness of the complexities of this illness that strikes 1 to 4 million Americans including children, teenagers, young adults, adults, and the elderly, according to the Center for Disease Control and Prevention (CDC)."
CFS community advocates for Ryan
In 2009, Pat Fero, director of the Wisconsin ME-CFS association and Jerry Rice, the Baldwin family's local advocate in their home in Buncombe County, North Carolina brought Ryan's situation to our attention. County officials had removed Ryan from his family, alleging that his parents have not provided him with "mental health care and access to a pediatrician."

Along with 23 other patient advocacy non-profit organizations, P.A.N.D.O.R.A. mobilized an awareness campaign that included letters and petitions to North Carolina Governor Bev Perdue, NC State Legislators and NC Federal legislators on behalf of then 16-year-old CFS patient Ryan and his family.
We were elated when Ryan was finally reunited with his family. We were even more excited when Lisa Baldwin, Ryan's mother, joined P.A.N.D.O.R.A. early this year to help with creating awareness of the issues that surround families with children with Chronic Fatigue Syndrome so that no other family will have to go through "the hell" that the Baldwin family did.

We encourage our members and others stakeholders in our community to leave a comment on the web site page of the article. If you are a parent of a child with CFS-ME, share your story. The "hell" that the family went through should not be in vain. P.A.N.D.O.R.A. is striving to educate physicians as well as the public. You can help us to achieve the level of awareness that is crucially needed.

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Pediatric Chronic Fatigue Syndrome Conference Committee Forming

To further address the need for better understanding and awareness of CFS in adolescents, P.A.N.D.O.R.A., a nationally recognized patient advocacy group which stands for Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc., is creating its first patient and physician CME committee to help plan a conference explicitly dealing with pediatric Chronic Fatigue Syndrome.
The Pediatric Chronic Fatigue Conference aims to provide the medical community and government authorities with the proper training and resources to launch important educational initiatives that will ensure that children with CFS and other chronic pain illnesses and their families will be treated with the respect and care that they deserve.
For additional information about the P.A.N.D.O.R.A. Pediatric Chronic Fatigue Syndrome conference committee, contact Marly Silverman at: contact@pandoranet.info
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™

NEI Center: Our mission statement

The NeuroEndocrineImmune (NEI) Center(TM) 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.

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Marly's Blog

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

Bringing Ryan Home

Ryan Michael Baldwin with Dog
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