WELCOME TO THE OLD WEB SITE OF P.A.N.D.O.R.A. - TO GO TO OUR NEW SITE CLICK HERE
We are pleased that you are visiting this old site of PANDORA.Click on the picture below to visit our new web site. The new web site was created by Scott Fink from IThinkFink.com. For historical reasons we are keeping this old site. It is fun to read about our past efforts and initiatives, as well as seeing the pictures of our volunteers, part-time staf, collaborators and founding board members. We look forward to seeing you at the new site.
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.
CALL TO ACTION!
We ask you to participate in these worthwhile advocacy efforts:
You wrote us and we took action! We now have the Facebook sister petition on Change.org for our members and supporters who are not on Facebook. Click here to send an urgent message to U.S. Secretary Kathleen Sebelius of the urgency for funding for Centers of Excellence for CFS- ME and other NEIDs.
You can also find P.A.N.D.O.R.A.'s petition addressed to the U.S. Secretary of Health on American Express Members Project-TAKE PART.COM
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.
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.
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. You can donate via Pay-Pal, American Express, and by check. and if you click on the Google Donate button below, we will get 100% of your donation amount.
Marly created and shared a Holiday Wish on Causes-Facebook. Even though the holiday season is over, the plight of this courageous family remains. Let continue to support the the Baldwin Family.
Click here for our letter to the FDA Blood Products Advisory Committee on December 8, 2010. Meeting will be held on December 14, 2010.
MCWPA AD Campaign
Here is the Press Release sharing the good news about the First Ever CFS-ME Patien Ad to be published in the Washington Post on December 6, 2010 in the Main section of the newspaper.
Click in the language of your choice for the MCWPA Press Release: Deutch translation, French translation, and Spanish translation. Thank you Cathy Van Riel for coordinating these efforts for P.A.N.D.O.R.A. and the MCWPA.
Click here for the "Time for Action" grassroots effort coordinated with the advertisement from MCWPA to reach members of Congress.
The American Red Cross has issued a statement regarding the ME-CFS blood supply.
Click here for the letter our organization sent to the American Red Cross. Click here to read America Red Cross statement in its entirety.
Here is an excerpt of their press release:
"...The AABB Taskforce released Association Bulletin #10-03 in June 2010, recommending that blood collecting organizations — through the use of donor education materials available at the donation site — actively discourage potential donors who have ever been diagnosed by a physician with chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis (ME), from donating blood or blood components. In addition, any donor with symptoms of CFS would be deferred if, on the day of donation, they respond negatively to the question, "Are you feeling well today?"
The Red Cross has implemented the AABB recommendations and has gone further to implement indefinite deferral for donors who reveal a history of a medical diagnosis of CFS."
A huge acknowledgement to Rivka, who created a video highlighting the concerns patients have in relation to the blood supply and XMRV; to Keith Baker, who organized a Facebook posting effort on the American Red Cross Facebook page with XMRV Global Action, and to Robert Miller, who persevered in connecting with the Red Cross by phone reaching Stephanie Millian, Director of the American Red Cross Biomedical Services Communications department.These patients concerns are also shared by the organizations, which sent their own letters to the American Red Cross. We are looking forward to the results of the Blood XMRV Scientific Research Working Group
meetings on Dec 14-15, 2010.
on our site.P.A.N.D.O.R.A. brought in the striking black and white ACT NOW Cards, which were used by patient advocates to express their concerns and outcry for the ME-CFS community in the U.S. and abroad. Pictured below are: Marly Silverman, Bob Miller, Joe Landson, Heidi Bauer, Charlotte, Ruth and Mike Dennis.
CFSAC meeting on October 12-13-14, 2010 was outstanding. Thank you Dr. Wanda Jones for making sure the 3 day meeting, which included a "Science Day" ran well.
top 200. Only 5 hours left to vote. The contest ends at
midnight. Click on the icon
box below.
We are realizing that many who have voted for PANDORA
previously do not realize that
with a gift vote received from
a friend they can vote again
for PANDORA. Get a gift vote
from a friend and vote TWICE
for our organization. Don't
delay your Vote today!
The founder of P.A.N.D.O.R.A. Marly Silverman, commented: "Our 500th Vote was from Paul O'Connor, pictured below, from Ireland.
It was an exciting moment to watch the vote come up on the screen and then read Paul's comments that he believed he was the 500th vote!! Paul later shared with me: "Voting for your charity is the least i could do! My girlfriend was diagnosed with M.E. two years ago and struggles with every little task. Your amazing charity gives her hope. I will of course spread the word!" Thank you Paul for your amazing support!
You too can support PANDORA vote today! Click on the icon below.
His last race was on April 16-17, 2010, Long Beach, California.
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A TWIBBON FOR
P.A.N.D.O.R.A.!
We have created a twibbon for P.A.N.D.O.R.A. utilizing the Advocates Extraordinaire Ribbon designed and donated to P.A.N.D.O.R.A. by Sebastian Chico. Support this very creative effort to raise awareness for
P.A.N.D.O.R.A.'S cause on Facebook and on Twitter.
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.
Click here for the January 6, 2010 article, written by Nelda Holder, published by the Mountain Xpress online paper in the Ashville-Black
Mountain area.As the family begins the
process of healing from the ordeal that was imposed by the local Buncombe County
DSS, and as shared by his parents with P.A.N.D.O.R.A.- "It is is wonderful to have
Ryan home with us". We will share their story with you through their own voices.
Due to the legal issues of this case, we refrained
from making any comments, which could have been misinterpreted or caused additional pain and retaliation towards Ryan's family.
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
