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.
NEI disease is mostly ignored and misunderstood. Most doctors know little or nothing about NEI disease, and there is no reliable treatment. I can no longer work because of NEI disease. Before NEI disease forced me to stop working, I was a Senior Administrative Analyst. Part of my work was to pick companies to work for us as on specific projects. P.A.N.D.O.R.A. impresses me so much I don't hesitate to recommend them. For example, they spearheaded an effort which led to the State of New Jersey approving the building and funding of a a NEI research and treatment center. This is exactly the kind of result we need if we want find a cure.
I am a 66 yo healthy male with a 32 yo daughter with cfids and an old girlfriend who had it. I have two colleagues who culture fibroblasts who got it. I have a patient who litigated for 25 years over employee disability insurance. She had to give up in order to get an inadequate settlement. You can not fight a war with the walking wounded. You have to organize financially and politically and push for decades to get the awareness and funding for the research necessary to solve the problem. Patient advocacy groups link patients to the effort to do this. Join PANDORA and other groups and do your part.
P.A.N.D.O.R.A. is an organization that reaches out to help people with neuroendocrine immune disorders. Based in Florida, they are known both nationally and internationally for their amazing work. P.A.N.D.O.R.A. is there to help, to foster research, to share current data, to extend a hand in support. Other organizations addressing similar issues have benefited from the encouragement provided to them by P.A.N.D.O.R.A. As a member of one of those organizations, I am thankful for the assistance we have received, which in turn increases patient outreach.
I was blessed to find PANDORA through the CFSAC online. I immediately began to think how very fortunate I was to have found such a rock solid website. There has been no limit to the massive amounts of knowledge I have gained regarding NEI patients. Having access to meetings attended by highly learned physicians and researchers in order to provide us with up to the minute news on the progress being made in these fields is a Godsend for me. Keeping patients alerted to the scientific gains as well as donating our own feedback is surreal. It's taken some years for those fighting for us at the top of the field to at last reach this point of having something to work with. I have learned more about my body in the 6plus years I have been sick thanks to PANDORA. Marly and Robert Silverman are such awesome advocates on our behalf, never leaving out details. Everything that comes across my email screen regarding my illness brings me a bit closer to understanding the complexity of it.
We have had CFIDS in our family for 14 years now. When we first got sick, few people had heard of our illness, and fewer people could act as guides for what we were experiencing. When we could not find an informed doctor to help us, online we found an educational conference, for which PANDORA was a sponsoring organizer. At that conference, we finally - and for the first time - met others in our own situation. We were especially thrilled to meet doctors who not only treat patients, but who participate in research and know the cutting edge science of our illness. The conference, and the ongoing online support we've found through Pandora, changed our lives. We no longer feel alone, and believe me - it's a big and lonely world out there when you are sick and isolated, like we were before finding Pandora. They educate the public and medical personnel, and are an important and worthwhile cause for anyone looking for a good place for their donations!
I have a number of auto-immune diseases including Fibromyalgia, Sjogren's Syndrome, Rhumetoid Arthritis, Psueod Gout and Interstitial Cystitis. I live in Oklahoma City and there is very little support here for patients with chronic pain issues. Unfortunately that also means there is very little education regarding chronic pain issues. P.A.N.D.O.R.A. stives to both serve the individual and to educate the public. This is essential to both treatment and to finding cures for the various diseases which cause serious pain. Their work has been invaluable in revealing to the public eye, the seriousness of the issues. Without non-profits such as P.A.N.D.O.R.A, there would be no education, no medications advocated for and no cures! Please support P.A.N.D.O.R.A. in any way possible in the future - help them as they have helped me!!