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WELCOME TO THE WEB SITE OF P.A.N.D.O.R.A.!
ONE VOICE, ONE COMMUNITY, ONE
CAUSE™
It is estimated that 20 MILLION AMERICANS are stricken by Neuroendocrineimmune Disorders. Worldwide the estimates can be staggering. Recently a demographics expert suggested that between 23-28 million individuals are now suffering with Chronic Fatigue Syndrome or ME worldwide. Despite of these high numbers, our single voices have no impact. We are yet to estimate the total financial, social and demographics impact of all the illnesses that we embrace in our mission. But we are working on it.
Our mission is to address and alleviate many of the issues that affect the quality of life of persons who are diagnosed with chronic fatigue syndrome (CFS), (also known as chronic fatigue immune deficiency syndrome (CFIDS) in the U.S., and abroad also known as M.E. or ME; fibromyalgia syndrome (FMS), Gulf War illnesses (GWI), multiple chemical sensitivities (MCS) or environmental illnesses (EI) and persistent Lyme disease (PLD)
As part of our outreach program in the community we also embrace individuals who have been diagnosed with multiple sclerosis (MS) and other related illnesses as these illnesses considerably overlap with CFS and with FM.
Our vision is to interrupt this cycle of suffering experienced by so many! You can help us. Donate to P.A.N.D.O.R.A. today. Click in the Google Donate Button below. Your generous donation will support the process required to establish Neuroendocrineimmune Disorders Research Centers in the U.S. and abroad. These special research centers dedicated to our community of suffering, will lead to scientific breakthroughs, physician training, scholarships for the chronically ill, and most importantly improve the quality of life for individuals with Neuroendocrineimmune Disorders (NEIDs).
WHY YOU SHOULD CARE
Neuroendocrineimmune Disorders (NEIDs) affect men and women of all ages. Government officials estimate that there are 20 million Americans (CDC,NIH,NIAMS,NIAID, NIEHS) stricken with NEIDs. These illnesses can be particularly harsh in children, teenagers and young adults as our school systems are not prepared nor have the training and knowledge to be able to provide what is required by federal & state law in providing special accommodations. Often parents are mired in allegations of medical neglect, dependency, unable to provide for their children and in the most draconian outcomes - being charged with Factitious Disorder by Proxy (FDP) formerly known as Munchausen Syndrome by Proxy. Even the elderly is not immune to NEIDs. The social services available to the elderly often overlook the physical challenges of having NEIDs. Adult men and women suffering with NEIDs are being discriminated in the work force, encountering legal disability process that reputedly questions the existence of these illnesses. They daily encounter a bias in the disability system across this country, that is hurtful, counter productive, and one that even the most educated physicians on the subject of these illnesses have not been able to break.
Yet, we persist. The uncertainty that these illnesses bring to people's lives are shocking, brutal, disabling and devastating. As these illnesses wax and wane, life altering adjustments have to be made often. The isolation of being confined to a bed or to a home because one is too ill and physically weakened, damages the emotional and will break the spirit. These individuals are quite fragile and yet, the lack of compassion displayed is a hindrance to these individuals potential recovery and well-being.
These illnesses rob the individual from the ability to cook, clean and bathe, and if he or she has a family, it robs them the ability to provide for their families too. There are no community social services being provided to these individuals with these special needs anywhere in these United States. Being bed or home bound takes a toll in a personal or family life.
For many Americans in communities across the country, we will find individuals unable to speak; unable to ambulate, and due to the cognitive impairment that accompanies these illnesses, these individuals are also unable to evaluate their personal situation. Combined, these challenges are a huge hindrance to quality of life, as the inability to express the reality surrounding them, also prevents these individuals from seeking public assistance or asking for family assistance. These individuals become INVISIBLE.
FINDING A TREATING PHYSICIAN
IS DIFFICULT, FOR SOME IMPOSSIBLE
Most often, these individuals do not have the financial means to see a physician, nor to pay for the specialized medical services that two dozen or so specialists found in the entire United States provide. Most of the specialists for Neuroendocrineimmune Disorders are Cash Only medical practices, meaning no medical insurance is accepted, including Medicare, which is a safety net by many who were lucky to obtain Social Security Disability benefits. Medicaid services due to its serious limitations on payment reimbursement will not provide access to these specialists either. Sadly a large majority of NEIDs patients are or will need at a certain time in their lives, these medical government programs or social services safety nets that are not geared to fully assist them.
Usually, primary care physicians are not familiar with NEIDs and often are intimidated by the task of treatment availability. In the sheer luck of finding a primary or family physician who wants to help his/her patients, they have difficulties referring their patients as there are not enough specialists in the U.S. much less in the world, to care for these patients. a A visit to an emergency room is met with scorn and cruel statements by the ER physician that "CFS, FM, Persistent Lyme Disease, MCS or even GWS do not exist". The medical ignorance displayed is not only cruel, but a sign that our medical schools are failing the public and are failing the NEIDs community. The community of suffering that P.A.N.D.O.R.A. represents, deserves better! P.A.N.D.O.R.A. in partnership with our strategical partners are indeed making a difference. But we still need YOUR HELP!
Pictured above: Dr. Gordon Broderick
Dr. in charge of the CFS, Gulf War syndrome & Fibromyalgia research center at the Department of Medicine, University of Alberta, Canada who is the recipient of a $3,000 special grant from P.A.N.D.O.R.A. in memory of Dr. Steven Croft . Our grant to Dr. Broderick is to be used for two of his intern medical students assistants. They are in the picture, next to Dr. Broderick: Landon Berger (middle) and Andrea Kreitz (right).
The grant from P.A.N.D.O.R.A. for Andrea Kreitz will complement her internship focus on the study of immune imbalance in Gulf War Illness, which is funded by the U.S. Department of Defense. Also with our grant, Landon Berger (middle of photo) will receive a travel stipend to work with a collaborator at Cornell University in the use of neuro-imaging for diagnosis of chronically fatigue syndrome patients, which is also funded by the CFIDS Association of America, Inc.
Pictured above are Dr. Kenneth Friedman, our Director Public Policy & a member of our executive board, holding two checks one for a $5,000 grant to the University of Miami - CFS-GWS Clinical Research Center (Dr. Nancy Klimas) and another for the Vermont CFIDS Organization for a medical student scholarship fund during our Golf Classic - Golf Fore A Cause, Swing Fore a Cure, on May 23, 2008.
Pictured above is Dr. Kenneth Friedman holding a $2,000 grant check donated to the IACFS-ME Association for a medical-research scholarship honoring Dr. Nancy Klimas, a member of our medical advisory board.
QUALITY OF LIFE
Quality of life issues have been a major focus in everything we do on behalf of PwNEIDs. Through partnership with other local, state and national organizations that share similar goals and mission we are indeed making a difference. Our awareness poster displays most of our educational community outreach programs that contribute and ensures quality in scientific research, quality of medical treatments, and quality of life for our community of suffering.
Please support P.A.N.D.O.R.A. nationwide efforts by making a donation of any size. As a 501 c 3, charitable organization, every generous donation we receive is tax-deductible under the IRS laws.
MEMBERSHIP IS FREE
We invite you to sign up for our free membership and free newsletter by clicking in the above right corner of this page. We are one of the very few non-profit organizations that don't charge for membership. We want to remain in this way. If you are a NEIDs' patient or care for one, all we ask is that you lend us your voice so we can be effective. Together we are strong. Together we can make a difference!
COURAGE DESPITE THE ODDS
PwNEIDs (Persons with Neuroendocrineimmune Disorders) are indeed courageous. Despite of the fact that they have to face personal, professional, and life altering challenges, that even for the ordinary person can be trying and difficult, they nonetheless find the will to survive in their attempts to lead a productive life.
But it is a long arduous, confusing and lonely path. P.A.N.D.O.R.A. hopes to alleviate some of the stress by providing you with local, state and nationwide resources, and enhancements that will give you a solid knowledge to go beyond being merely a survivor, and becoming an accomplished thriver.
BRUTAL REALITY TO MILLIONS OF
AMERICANS
Neuroendocrineimmune Disorders are a brutal reality to now millions of Americans and millions worldwide. But we can change that with your generous donation. Help us to continue our mission by creating change within communities across the country and worldwide. Help us to save an individual, and his or her family from NEIDs' devastating effects. Make a donation today. Click on the Google Donate Button below and make a difference!
Become a Member of P.A.N.D.O.R.A. Today and Join Our Mailing List Enter your email to receive our newsletter containing information about upcoming events, empowerment meetings, and updates on research and advocacy.
CDC Announcement
The CDC announced on
January 27, 2010, that "Dr. William Reeves has accepted an assignment as Senior Advisor for Mental Health Surveillance in the Public Health Surveillance Program Office (proposed) within the Office of Surveillance, Epidemiology, and Laboratory Services (proposed). The effective start date is currently scheduled for February 14th. Dr. Reeves will no longer be assigned to the CFS leadership program.
We wish Dr. Reeves great success in his new business endeavor. Dr. Elizabeth Unger meanwhile will be the Acting Chief, Chronic Viral Diseases Branch (CVDB), also effective February 14th. We look forward to working with Dr. Unger on issues that affect our overall community.
Dr. Judy Mikovits Video on XMRV virus Presentation
An alliance of 23 patient advocacy non-profit organizations signed off on a letter to Governor Bev Perdue asking her to investigate why the Department of Social Services (DSS) in Buncombe County, NC has taken the draconian steps of removing Ryan from parental care.
P.A.N.D.O.R.A. wrote letters to Buncombe County Commissioners, NC State Legislators and NC Federal legislators on his behalf and of his family.
Click here to read the letter written to the Governor Bev Purdue.
We are grateful to Pat Fero, from the Wisconsin CFS-ME Association for calling our attention to the plight of this courageous family.
CFS Advocates attended this meeting in person or via the web site video-cast. On the first day October 29, 2009 - 400 Hits in the AM presentation via the the web cast. Hundred more have sent their story to the CFSAC committee. We want to thank those who sent their testimony via e-mail and cc Marly Silverman too.
Click here for Marly Silverman's CFSAC testimony on October 29, 2009.
Click here for Dr. Kenneth Friedman's CFSAC October 30, 2009 written testimony.
Note: Unfortunately
Luminescentfeelings - friend
of PANDORA's on
Youtube.com closed his account on youtube.com therefore Dr. Friedman's and Marly Silverman's videos as well as of the others who provided testimony at the October CFSAC meeting are no longer available but we will upload them directly to our youtube.com account and will let you know when is ready for viewing. We are sorry that Luminescent closed his account but we remain grateful for the great work he did.
Please click here for the expanded and written input that was made orally on April 27, 2009 at the CDC CFS Stakeholders' meeting. This same input was provided to the CFSAC meeting as well.
CFSAC meeting on May 27-
28, 2009 was one of the
best PANDORA has ever
attended.
Click here to read the written testimony provided by PANDORA. Marly Silverman, founder of PANDORA was given the opportunity during the time assigned for public testimonies to speak. She used Facebook and report on some of the action during the first day. She also posted on ME-CFScommunity.com
Click here to view the archived video broadcasts for both days. We were told that from now on all future meeting of the CFSAC will be broadcasted in order to comply with the ADA government mandates. A victory indeed for everyone involved in getting this off the ground - Rebecca Artman, MAME (Mothers Against Myalgic Encephalomyelitis), Dr. Kenneth Friedman, PANDORA's The Empty Chair Project in partnership with advocates from almost all 50 states including national, state and local sister organizations including local groups who sent pictures, who wrote letters that we delivered to our congressmen, made phone calls and a special acknowledgement goes to MAME (Mother Against Myalgic Encephalomyelitis) a group of concerned grass roots advocates led by Jean Harris. Her team filed with the Office of Civil Rights to ensure accessibility of these meetings to the disabled would be accommodated. Kudo to her dedicated team! Our patient advocacy community through unity has its VOICE back where it needs to be.
Financial assistance is now available with medical co-pays from the Patient Advocate Foundation, Co-Pay Relief Program. If you have difficulty paying your medical co-payments and you suffer from chronic pain, you may be able to qualify for this financial assistance program. To file an application please click here. Every month they accept new applications.
PATIENT ALLIANCE FOR NEUROENDOCRINEIMMUNE DISORDERS
ORGANIZATION FOR RESEARCH AND ADVOCACY, Inc.
A not for profit 501 (c) (3) charitable organization #550795076
Business Office: c/o Viña + Company, 255 Alhambra Circle, Suite 715
Coral Gables, Florida 33134
Phone: 305-441-1591 Volunteer help line: 954-783-6771 Fax: 954-783-1098
