7 people found this review helpful
PATIENT ALLIANCE NEUROENDOCRINEIMMU DISORDERS ORG FOR RESECH & ADV INC
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Featured Review
November 1, 2012
7 people found this review helpful
This organization started as a one-woman show in Florida with an impossible mission. With a lot of hard work, the organization has grown from a local, statewide organization into a national presence. Although the organization represents and speaks on the behalf of other illnesses, P.A.N.D.O.R.A's focus on patient advocacy for chronic fatigue syndrome patients is unique. There is currently no other organization that advocates for the million or more patients with this illness at the national level. Advocacy for patients with this illness at the national level is of paramount importance as the federal government and the medical profession have ignored these patients and challenged the patients' belief that their belief is "real." Without P.A.N.D.OR.A. advocacy at the national level, there is little if any hope for these patients leaving them to suffer untreated or kill themselves.
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Will you volunteer or donate to this organization beyond what is required of board members?
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?
2012
December 19, 2012
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
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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
3 people found this review helpful
November 12, 2012
3 people found this review helpful
ME/CFS has a horribly negative impact on millions of lives. PANDORA is a positive voice for those of us who are ill. The people are so warm, friendly, helpful, and giving. I just can't say enough good things about this organization, and will volunteer to help whenever I am able.
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Would you volunteer for this group again?
Definitely
For the time you spent, how much of an impact did you feel your work or activity had?
Life-changing
Did the organization use your time wisely?
Very Well
Would you recommend this group to a friend?
Definitely
When was your last experience with this nonprofit?
2012
3 people found this review helpful
November 12, 2012
3 people found this review helpful
PANDORA works with neuroendocrine immune disorders, including ME/CFS, Fibromyalgia, Multiple Chemical Sensitivities, Chronic Lyme Disease, and Gulf War Illnesses. They provide education for patients and for physicians. They advocate for government services for patients and increased government funding for medical research. An innovative program is the training of patients to be effective advocates for themselves. Local fund-raisers are held to fund patient services and medical research. This is an organization which has inspired hope in me and in countless other patients in this country and beyond!
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When was your last experience with this nonprofit?
2012
3 people found this review helpful
November 6, 2012
3 people found this review helpful
P.A.N.D.O.R.A. has a history of accomplishing seemingly impossible tasks and thinking outside the box. We need more organizations which demonstrate such creativity and stick with a task until it is accomplished. This organization has not only done so many things on its own, but is also frequently involved in helping other groups achieve their goals. As a patient community, we would not be where we are today without P.A.N.D.O.R.A.
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Will you volunteer or donate to this organization?
Definitely
How much of an impact do you think this organization has?
Life-changing
When was your last experience with this nonprofit?
2012
4 people found this review helpful
November 5, 2012
4 people found this review helpful
PANDORA does and AMAZING job at advocacy and raising awareness and helping the Millions with ME/CFS , Fibromyalgia, MCS and other related invisile illesses.So many suffer in silence with these diseases which are so poorly understood by both the Medical profession and the public-including patients own families and friends. Providing information, compassion and understanding and support is so key to being able to survive, just day to day, and to have hope for a better future. They give outstanding individual, personal and group support and are always there, on Facebook, Website, and at all important Government and other meetings, as well as organizing many of their own events.
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
When was your last experience with this nonprofit?
2012
3 people found this review helpful
November 4, 2012
3 people found this review helpful
P.A.N.D.O.R.A. started with just one person who needed information about M.E. and not finding what she needed, she did research. This research led to more information being able to be shared by others with this disorder. Then it grew and grew to what it is today. There are so many of us with these devastating neurological disorders and illnesses who are in terrible pain who now come to this group for help. P.A.N.D.O.R.A. now has the ability to help so many people with many different neuro disorders around the United States. This shows us that not only can we all help others but just look what one person can do!
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Will you volunteer or donate to this organization beyond what is required of board members?
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?
2012
4 people found this review helpful
November 1, 2012
4 people found this review helpful
PANDORA is dedicated to improving the lives of people with Myalgic Encephalomyelitis (M.E.). PANDORA is focused on helping patients integrate M.E. as part of their daily lives. This is mostly done through education. PANDORA is also heavily involved in awareness and advocacy. All of this is done to bring hope and help to the millions suffering from neuroimmune disease such as M.E.
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Will you volunteer or donate to this organization beyond what is required of board members?
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?
2012
5 people found this review helpful
October 30, 2012
5 people found this review helpful
I am greatly impressed by the work PANDORA does to help patients like me and to raise awareness of these devastating diseases.
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Will you volunteer or donate to this organization?
Likely
How much of an impact do you think this organization has?
Life-changing
When was your last experience with this nonprofit?
2012
5 people found this review helpful
October 30, 2012
5 people found this review helpful
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.
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
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