Patient Alliance Neuroendocrineimmu Disorders Org For Resech & Adv Inc

Rating: 4.51 stars   93 reviews

Nonprofit Issues:

Health

Address:

3625 Orchard View Traverse City MI 49684 USA

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.

2015 Top-Rated Nonprofit
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More Info

231-360-6830
www.pandoraorg.net

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Reviews for Patient Alliance Neuroendocrineimmu Disorders Org For Resech & Adv Inc

Rating: 5 stars  

5 people found this review helpful

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.

If I had to make changes to this organization, I would...

Not a thing. I have been an active member in the health community for 12 years, and the leadership and professionalism exhibited by PANDORA's advocates is inspiring. America is facing a Pandemic. The number of patients is growing faster than the facilities available to treat patients. As an advocate I have spoken with thousands of patients from all over the country, Canada and Europe. NEI Centers in every state bringing patients, physicians and researchers together is a viable solution.

Will you volunteer or donate to this organization beyond what is required of advisors?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

1 person found this review helpful

the national cfids foundation announced a causal find with links to radiation in a newsbreak in August 2012 'typo 2010' working close with research team from wayne state university wher they found broken cromosones with translocations...this same group found the same in 2007 in gulf war syndrome patients and was on the discovery channel on utube parts 1to5 entitled 'gulf war vets conspiracy blood test' my understanding was this was done by blood tests and the latest ones were found in urine samples from the cfs group...some had gamma some had alpha some had alpha gamma and beta...now the cfids foundation is looking also into vibrio fish infections back at the university of hawaii because of a previous study there on ciguatera 'epitopes' which was showing something very different to normal ciguatera infections plus the fact numerous patients attribute their onset of illnesses after eating different fish or shell fish type meals...I know for a fact while in Montreal there was a restaurant my fiance and I would eat at on a regular basis and this same restaurant had a couple of deaths during this time due to undercooked or contaminated sea foods so I now wonder if there is a link to that time...also drs dan peterson and nancy klimas returned from bond university with a find in I think was cd57 which is consistent to radiation illness and I have heard also our bloods are florescent and glows...is it highly likely i think its very plausible plus we had chernobyl incident plus 3 mile island now japan plus military vets are now speaking out on chemical biological and radiation weapons used in all gulf wars...plus greenpeace investigated numerous radiactive drum barrels dumped by militaries in our oceans close to shore and when they did investigate these drums were completely empty...wher did the radiation go????????????? sincerely and always the full truth mr aidan g walsh

Will you volunteer or donate to this organization beyond what is required of advisors?

Unsure

How much of an impact do you think this organization has?

A lot

Will you tell others about this organization?

Likely

When was your last experience with this nonprofit?

2012

 
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