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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.

2

Client Served

Rating: 5

PANDORA brings light and joy for many dealing with too many dark days. Their love has covered me on more than one occasion. So very thankful for their caring hearts & hands!

2 hope4us

Client Served

Rating: 5

PANDORA is such a needed voice for all patients with neuro-immune endocrine disorders. Not only do they advocate on a federal and local level they also assist patients with basic needs in the area. PANDORA gives all patients hope and dignity!

3 LoriKroger

Board Member

Rating: 5

Your donations make a huge difference in peoples lives. 98% of donations are used for programing. It is a pleasure to serve the people who rely on Pandora Org! This is the only ME, CFS and fibromyalgia organization that directly serves patients. My heart melts every time a recipient is over the moon happy to get help.

You see, most people with these illnesses feel abandoned and isolated. Pandora Org remembers them and acknowledges their suffering and existence. Can you imagine being too sick to walk to the kitchen to cook? People with severe ME are bed bound. I know people who have eaten cereal for each meal because it's easy to have a box of cereal at bedside. Pandora Delivers™ fresh meals is a game changer for these people. It's a difference of being placed in managed care or staying home and remaining independent.

Previous Stories
3

Donor

Rating: 5

I am the president of Pandora Org and our board members take an active roll in making sure that individuals are not forgotten. We offer meals, gas money to doctors appointments and send gifts to people who are isolated.

I am a volunteer president, and all the board members are also volunteers. We don't profit financially from our service. In fact, I donate to Pandora Org so I pay to "work" here. What a privilege! We do, however, get paid with showers of praise by the patients and their families for making a difference in their lives.

We also advocate for better health policies. Myalgic Encephalomyelitis is not understood, so medical care for these patients is sub-standard. There are not any treatments or medications for this illnesses. Our roll to educate physicians and governmental officials is sometimes met with opposition. There were a loud few last year that took it upon themselves to criticize Pandora Org for taking a strong stance in helping the Institute of Medicine with their peer review study on ME. These few gave us poor ratings based on politics. Take their comments with a grain of salt. I'm sure you can see from the many 5 star ratings that we are an upstanding and honest organization who cares deeply about people.

Please consider donating, or volunteering, so we can continue our good works that directly support patients with compassionate care programs.


1

Board Member

Rating: 5

A wonderful organization that provides so much for those in need of support. They have helped my daughter greatly with her ME and helped her get diagnosed when no one else knew how. Great advocates as well! Very worthy of your donation!

1 Terry97

Client Served

Rating: 5

I received the most beautiful red and white throw quilt from Covered in Love (one of the services provided by Pandora) at a most difficult time in my life. I have a chronic illness called M. E. which had progressed to the point where I couldn't work anymore. No matter how much I willed my body to function, it was like trying to get a car to start with a dead battery.

My doctor could see how much I was struggling, and indicated it was time to medically retire. I was risking my life by continuing to try to push forward. It was devastating news because I loved my job as a school counselor. I was no longer able to do what had been my passion, and to be productive in the world in the way I so desired. Financial worries loomed like thunder clouds overhead. My life seemed very bleak and limited at that time.

That amazing gift arrived at such the right moment. I cried out of sheer joy when I read the beautiful note which described how with every stitch there was much love sewn into that quilt. What had been such a moment of despair had been turned into such a moment filled with overflowing love!! It hasn't been quite a year yet since I received my quilt, but every time I see that gorgeous quilt or wrap myself up in it, love and joy abound.

Pandora has also offered meals at a very difficult time when my husband had been in the hospital for 11 days. He was now home, and I was literally on my own with out much help from the outside world. My husband who usually was the caretaker and did the food shopping was obviously unable to do so at this time. He was recuping from his surgery and unable to drive. I was in a vulnerable sutuation. I had exhausted the little energy I had, yet we had run out of food. I wasn't capable of going out shopping at that time. Pandora stepped in and offered to send us frozen prepared meals. I will always be indebted to them for that offer!!

I have seen how Pandora has so generously made the lives of others much better by the services it provides my patient community!!! Many are isolated, homebound, and without help. Thank you, Pandora, for always seeming to step in at the right moment !!!

1 Jan_55

Client Served

Rating: 5

PANDORA set me up with meals during a severe crash when I was unable to prepare nutritious food for myself. At a time when I needed help most, they were there for me. To one who has a disease that is invisible to most of the world, the help from this wonderful organization is a shining light in a dark world.

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3

Donor

Rating: 5

I have many neuroendocrineimmune disorders, i.e. ME/CFS, FM, Interstitial Cystitis, Sjogrens, and others. I so admire the wonderful folks at PANDORA for their hard work, caring and support for patients with NEIDs. I have observed and participated as I have been able in their many advocacy efforts. They strive to spread awareness, advocate, educate, support patients in various ways, and promote research. One of their most important endeavors is physician education. Thank for all that you are doing for our "invisible" illnesses!

2 April82

Client Served

Rating: 5

Wonderful organization! They have helped me with meals when I couldn't make my own and just recently I received the most beautiful quilt from the Covered in Love Program. It arrived on my birthday which was awesome! I love Pandora!

3

Board Member

Rating: 5

In October 2014, 10 people, in a concerted effort, posted 1-star reviews of PANDORA Org. to try and influence our rating negatively. They were angry because once we had learned HHS had already contracted with the IOM for the ME/CFS study, we decided to work with HHS and the IOM to ensure the IOM panel had the best membership possible and was asking the right questions with the best instructions possible. Others wanted us to join them in trying to have the contract cancelled, but we believed our fallback position was essential.

As it turned out, the IOM panel, with over half the panel members being experts in ME/CFS, conducted a very thorough and honest review of ME/CFS (which they recommended renaming SEID) and provided very strong and favorable results. After some initial shock and backlash about the report, everyone saw the government actually start taking action by funding SEID research, taking renewed efforts to reinvigorate SED strategic planning, treatment plans, developing diagnostic criteria, and more. Now patient groups are enthused and hopeful for the first time in a long time.

PANDORA doesn't expect to get any credit for choosing the right path, now that it's apparent we did, but we would hope we've developed some credibility with the community of ME/CFS (SEID) advocacy groups that we do share common interests and do have some workable ideas and expertise working with government agencies. We hope they will give us some credit in the future as we help lead the way in bettering the lives of our patients through advocating for better funding, research, treatments, and solutions.

Previous Stories
3

Board Member

Rating: 5

PANDORA Org is an all-volunteer organization that operates with very little funding, yet does very big work on a national level. It advocates for patients with NEIDs (ME/CFS, Fibromyalgia, Chronic Lyme Disease, Gulf War Illness, Multiple Chemical Sensitivity, and more) to the HHS, FDA, NIH, IOM, VA, and all the alphabet soup that is our federal government. And it advocates successfully. It is well-respected by those government agencies who recognize the number of patients that PANDORA Org supports. We also have been very active working as partners with other ME/CFS, FM, Lyme, and GWI groups to collaborate on difficult challenges, bringing all our power to bear on these tough problems.

Beyond this national advocacy mission, PANDORA Org also does the little things that mean a lot to patients - supplying meals to those who are most ill or following a surgery, sending a quilt to those who need a hug or the warmth our group can provide, a gift of flowers and a card to our special friends when they need a lift.

We can't help everyone because we never have enough money or volunteers, but we do what we can. We have brought on some new board members and officers and are refocusing on strategic planning and fundraising so we can better support our community of patients and advocate with more direction, train more doctors and nurses, and do all the things we've wanted to do. With luck and help, we'll be able to serve our patients even better in the future!

2

Client Served

Rating: 4

I was diagnosed in 2013 but was sick some time before. I was alone and in need of information and Pandora was there providing information (and hope) not available elsewhere. This non-profit is at the forefront of research....but also an organization that is there for the individual. I don't know what I would have done had I not found them. These illnesses are scary....but Pandora is there to hold your hand and help.

1 Francesca O.

General Member of the Public

Rating: 5

PANDORA is a long term established non profit helping the disabled chronically ill community. They add tremendous value to the lives of those affected with these horrible illness. Keep up the great work!!!