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2016 Top-Rated Nonprofit

Pandora Org

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Nonprofit Overview

Causes: Health, Specifically Named Diseases

Mission: Our mission is to raise awareness and restore quality of life in persons with myalgic encephalomyelitis, fibromyalgia and related NeuroEndocrineImmune disorders. PANDORA empowers through patient assistance programs, is strong on advocacy, fosters education, and champion cures for neuro-endocrine-immune disorders through research. Vision: To make Myalgic encephalomyelitis, Fibromyalgia and related neuro-immune diseases understandable and curable.

Results: To date, there are no FDA approved treatments for myalgic encephalomyelitis (ME). PandoraOrg, along with other organizations, were responsible for getting an FDA stakeholder meeting with patients and key governmental agencies at the table. PandoraOrg was asked to give a report about ME to the IOM during their scientific process of reviewing the state of ME/CFS. We were able to provide immediate assistance to hundreds of patients with our Compassionate Care Programs by delivering meals, giving Covered in Love quilts and helping with transportation to appointments.

Target demographics: Individuals stricken with NeuroEndocrineImmune Disorders.

Direct beneficiaries per year: patients by delivering several hundred meals. 46 quilts have been hand sewn and presented to those experiencing isolation and helplessness.

Geographic areas served: improving patients lives

Programs: PandoraDelivers™, arranges for nutritious fresh meals to be delivered nationwide to patients who are too sick to cook for themselves. The program helps with short term needs for patients who are going through an especially tough time such as returning from hospital visits. Covered in Love program provides home sewn quilts to patients experiencing a loss, undergoing distressing circumstances or facing a scary medical procedure. Advocates Extraordinaire™, a leadership advocacy program aimed to teach patients to express effectively their personal voices and work in collaboration with our board to implement fund raising, grass roots campaigns, media awareness. One Voice, One Community, One Cause™, an advocacy program dedicated to bring unity to our overall community, We aim to reduce the gap between the many organizations and patient groups working as a bridge to facilitate understanding, foster collaboration and increase trust among the groups and other stakeholders. The goal of the program is to engage our health government agencies in a much needed conversation and assure a seat at the table on issues affecting public health.

Donor & Volunteer Advisory

This organization's nonprofit status may have been revoked or it may have merged with another organization or ceased operations.

Community Stories

109 Stories from Volunteers, Donors & Supporters

8 Donna N.

Client Served

Rating: 5

I have tears in my eyes when I try to describe what PANDORA has done for me. They offered support and guidance when all seemed lost. A family member was hospitalized and our rights were being violated. There was internal chaos within the hospital over our case. PANDORA was there with us, step by step, sorting out the steps, and with PANDORA' s help and our insurance company, we were able to have the strength to leave the hospital AMA and get the second opinion we needed, which was drastically different from the first. They also sent us a gas card to help with travel cost. The passion and compassion that drives the volunteer members is amazing. They understand the needs of people who have NEIDS. They change words into action for what is needed most to help a person overcome rough spots.

3

Board Member

Rating: 5

I have never had the pleasure of working with a more dedicated group of individuals that put the patient's needs as an absolute top priority.

2

Professional with expertise in this field

Rating: 5

They take on the challenge of making people aware of very devastating illnesses and advocating on their behalf.

3 Emma3

General Member of the Public

Rating: 5

As a patient with ME/CFS, I am immensely grateful to PANDORA ORG for all their amazing advocacy work. Without organizations like them, we will never get the proper funding for biomedical ME/CFS research or the health care that the ME/CFS patient community so desperately needs.

ME/CFS is a severely debilitating neuroimmune disease which has been overlooked by the public authorities for decades. Change is needed, and PANDORA helps bring it around.

4 Pam_87

General Member of the Public

Rating: 5

Pandora does an amazing job of supporting a large and usually neglected community. The most important thing Pandora does for me is help me to keep hope. They educate the medical profession, which is a HUGE need, and patients and family, as well as offering a lot of practical and trusted help, when often there is virtually no support or understanding in a patient's home community

5 Kim_159

Client Served

Rating: 5

There needs to be more groups like this one. Educating the medical field and patients. Giving help to those who would normally suffer in silence due to the range of care/education their medical team has. Fighting for so many that cannot make it out their bed or home. Compassionate about all that are suffering.

4 frenchtulip

General Member of the Public

Rating: 5

PANDORA ORG does an outstanding job for patients with NEID's and their families! They work to educate patients, their families, and physicians about NEID's. They engage in advocacy, support research, and are committed to improving the qualify of life for patients. PANDORA is an all-volunteer organization with compassionate and extremely committed leadership!

Previous Stories
4

Client Served

Rating: 5

P.A.N.D.O.R.A. serves an estimated 20 million Americans affected by Neuroendocrine Immune illnesses. These illnesses include ME/CFS, Fibromyalgia, Multiple Chemical Sensitivites, Gulf War Syndrome, and persistent Lyme disease. The organization serves as an advocate for those suffering from these illnesses by helping shape public policy and supporting education and research. They are currently working toward the establishment of a clinical and research facility in New Jersey, the NEI Center. Their ability to bring people from different groups together has been impressive. Although they are a small organization, they were successful in getting other groups to vote for them in the recent Community Chase Giving Contest and won $20,000. The prize winnings will go largely toward the NEI Center. Their motto is: "ONE VOICE, ONE COMMUNITY, ONE CAUSE." Their dedication, enthusiasm, and "I Can!" mentality inspires everyone and gives hope that we will find ways to alleviate the suffering of those with NEI illnesses.!

Review from Guidestar

5 Tammie P.

Client Served

Rating: 5

As someone with multiple NEIDs, I am so thankful that PANDORA exists. Not only do they do a ton of good work; helping spread awareness, advocacy, education, supporting patients in various ways, promoting research, etc, etc, but by doing so, they also bring so much hope to a very under served patient population. When one is as sick as many of us are, and there are so few that even try to understand, let alone actually help, and so little good research for treatments and cures, etc, knowing that there is a group that truly cares is HUGE. Many in this patient population wind up committing suicide, because we are so sick, and have so little hope for good treatments, and so little validation. The impact of the hope for a better future that PANDORA gives us cannot be overstated, nor can the understanding and caring that they show over and over to so many patients.

4 Barb L.

General Member of the Public

Rating: 5

I'm so thankful for all their work! They are helping those of us who are too ill too fight for research for CFIDS/ME!

4 ____730

Volunteer

Rating: 4

Pandoraorg is here to help. They have done a wonderful job gathering information pertaining to those that suffer from many medical conditions and spreading the word. They also work to improve the lives of those suffering.

2

Volunteer

Rating: 5

How about a new name? I suggest Neuro-Endochrine Exhaustion Disorder - (NEED)!

4 Cathy38

Client Served

Rating: 5

This non profit organization has helped so much with my battling a misunderstood illness.
I have learned so much and have made so many friends. Without people like this I felt so alone trying to understand what even Doctors don't understand. Thank you Thank You Thank You!

Previous Stories
8

Client Served

Rating: 5

I was diagnosed with ME/CFS in 2010 at Mayo Clinic. Back in my hometown I couldn't find a doctor who was educated about this horrible illness. I reached out to PANDORA & CF Solutions of West Michigan. I received hope, support &, education. They even had information that I could share & educate my doctors with. They are always kind and get back to you in a timely manner if you have a question, which is amazing since most of them are as sick as I am. I am very greatful for an organization like this.

2

Professional with expertise in this field

Rating: 5

My non-profit has worked with Pandora since 2006 and have found them exceptional. They are volunteers who work tirelessly on behalf of patients suffering form ME/CFS, Fibromyalgia and neuroimmune illnesses. IIt has been our pleasure to have worked with them on many projects.

2

Volunteer

Rating: 3

This group has done well in Michigan and is working on bringing their services to other states and county's across the USA.

3

Client Served

Rating: 1

I should say I am a client UNSERVED! This organization is actually a local support organization for people in Michigan. Since I do not live in Michigan, all it does for me is continually ask me for money so they can do their services for their Michigan people.

They say they are a national organization, but all they really do is serve people in Michigan.

4

Client Served

Rating: 5

PANDORA exceeds expectations. They have supported my with ME/CFS with educational programs, providing me a place to stay when advocating. Top KNOTCH non profit serving the neuroendorcineinnu disorders! I can't thank thank them enough! Most advocates have this disease so it is incredible with the amount of work and efforts that take place year after year!

4 Omayra

Client Served

Rating: 5

Always read very helpful information and they keep me informed of the latest news about CFS. A plus!

5 Bonnie M.

General Member of the Public

Rating: 5

In my opinion P.A.N.D.O.R.A. has done so much for an under-served population (PNEIDS) with so little. Giving attention to medical,social,emotional and political needs of persons with neuro-endocrine-immune disorders.
Making efforts to unify to community of patients for the betterment of all.
I know for me personally at about the 3rd yr after being diagnosed and very discouraged (now @10yrs )
I found a P.A.N.D.O.R.A support group that had such a positive aura it helped me tremendously. I was motivated to become a volunteer and work on projects.It gave me a much needed outlet. Unfortunately my condition has deteriorated that I'm not able to participate as before, however I still support P.A.N.DO.R.A. in anyway I can and continue to get support from them by being able to stay current and knowing they are doing the best they can for for persons like M.E.

5

Client Served

Rating: 5

When I was first diagnosed with CFS, many of my "friends" told me to just "suck it up" and push through, there's no such thing. Many of us heard the same type of things, but with the education and support, I've received from the support group, I've helped the people most important to me to understand. They really have saved my life!

5

Advisor

Rating: 5

In 2007, I first met members of PANDORA and its founder Marly Silverman in person at a conference in Fort Lauderdale. As founder/president of the LIFELYME Foundation, Inc., I established our organization to serve as a educational resource for Lyme disease and other Neuro Immune Disorders. In 2008, two members of PANDORA were invited to speak at a conference our organization co-sponsored with the University of South Florida in St. Petersburg, FL. The conference was called, "Similarities and Paradoxes in Chronic Illnesses". Our intention was to bring together for the first time the top physicians and researchers with expertise on illnesses under the NEI umbrella to share their expertise on CFS/ME, Fibromyalgia, Lyme Disease, Gulf War Syndrome and Environmental Illnesses. Speakers Included: Brian Fallon MD, Nancy Klimas MD, Charles Ray Jones MD, JJemsek, MD, Leslie Fein MD, Dr. Kenneth Friedman Ph.D, and Kerry Clark Ph.D. Epidemiologist. In the following year, LIFELYME partnered with PANDORA to establish a NEI Center in New Jersey. A 'Resolution' to establish a NEI Center in NJ was passed unanimously. Hopefully in the future progress will be revitalized and make this dream a reality. Support is paramount to the success of the future visions of PANDORA. The members of PANDORA are giving their all in this effort to provide awareness, education, research and patient care for all patients suffering with these illnesses. Support PANDORA - The health of all Americans in the future depends on everyone's support.

5

Volunteer

Rating: 5

When I first became ill with this devastating disease, the first information I took seriously was a few websites that had "Memorial Lists" of people who suffered greatly before their disease overcame them. However, P.A.N.D.O.R.A was the first Patient Centered Organization that I could trust for accurate, and hopeful education regarding my disease day by day. There was much support for me at all stages of my deteriorating health. As time went on, I was better informed to focus on all the ways my Quality of Life can be improved. This is a very frustrating illness to get medical care for, but with the help of P.A.N.D.O.R.A's long suffering expertise, I have grown immensely in understanding how my life can be stronger on a daily basis.

I have learned to be an advocate for myself and others thanks to Lori and Marly. I enjoy any opportunity to interact with the staff and Leadership of P.A.N.D.O.R.A. I believe with the coaching, advocacy, education opportunities and my own personal, individual assistance, my life has been greatly improved in spite of the illness. P.A.N.D.O.R.A enlightens HOPE for millions who seek them for comfort.