Statement from P.A.N.D.O.R.A.: Ryan Baldwin case is an ominous wake-up call
Our very best wishes to Ryan and his family.
Baldwin Family website: http://www.bringingryanhome.com/
Home for good?
Black Mountain couple regains custody of son
by Nelda Holder in Vol. 16 / Iss. 31 on 02/24/2010
Statement from P.A.N.D.O.R.A., Inc.
FOR IMMEDIATE RELEASE
26 February 2010
By Marly Silverman, Founder & President
The case of Ryan Baldwin is an ominous wake-up call of the need for awareness of Pediatric Chronic Fatigue Syndrome
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).
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 CFS-ME 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.”
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: firstname.lastname@example.org .
About P.A.N.D.O.R.A., Inc- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy P.A.N.D.O.R.A. was founded on July 1, 2002 by Marly C. Silverman, a Chronic Fatigue Syndrome and fibromyalgia patient. Our mission is to raise awareness of the plight of persons with chronic fatigue syndrome, fibromyalgia, Gulf War illness, multiple chemical sensitivities, environmental illnesses, and persistent Lyme disease and advocate on quality of life issues.
In 2008, P.A.N.D.O.R.A in partnership with the Lanford Foundation-Lifelyme, Inc. , established the NeuroEndocrineImmune (NEI) CenterT, a community, patient-driven grass roots project to be based in New Jersey. The NEI CenterT will be the first research center dedicated to understanding and treating chronic neuroendocrineimmune illnesses.