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48 Reviews
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October 30, 2012
5 people found this review helpful

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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.

More feedback...

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

February 21, 2011
4 people found this review helpful

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February 21, 2011
4 people found this review helpful

The Advocacy Campaign set in motion by PANDORA helped to free
our Grandson from the unauthorized medical experiment conducted by
our local Department Of Social Services (DSS) in an attempt to prove
that he was not really sick and did not have ME/CFS. Local and national
politicians
and even the Govenor of the State of North Carolina were
all alerted by PANDORA and their contacts worldwide. Our Grandson
was finally released 10 months after removal from his parents loving
home. Thank you .

The Great!

I've personally experienced the results of this organization in...

They advocate for the needy and disabled members of our society.

Ways to make it better...

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

Attempt to greatly increasing their funding.

February 13, 2011
1 person found this review helpful

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February 13, 2011
1 person found this review helpful

I commend P.A.N.D.O.R.A.s focus on quality of life for persons with
Neuroimmune disorders, efforts in embracing and unifying all persons and other organizations dealing with NEI disorders in such a positive manor. A model all such organizations can benefit from. The functions and
accomplishments are immense considering the small budget and relatively small size of the Org.
The founder is truly an inspiring role model of dedication and altruistic acts in the face of her own struggle with NEIDs.

The Great!

I've personally experienced the results of this organization in...

I became familiar with and inspired to become involved with P.A.N.D.O.R.A. many years ago after being ill and floundering for 2-3yrs.They provided me with much needed support, direction and education with Neuro-Immune disorders, and of most importance empowerment in the face of an unpredictable and unstable life altering illness.

Ways to make it better...

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

P.A.N.D.O.R.A is well run.Does not have paid employees.Is very judious with using funds donated. While every Org. has room for improvment. More volunteers and funds to accomplish even more. An increase in volunteers not affected by the illness would be wonderful.

February 12, 2011
1 person found this review helpful

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February 12, 2011
1 person found this review helpful

PANDORA is a wonderful organization and one that our family received direct help from during a serious crises in 2009/2010 and one involving our entire
family.

We were very fortunate to have PANDORA's assistance and our family feels blessed to have received their help. Please
visit our family's website www.bringingryanhome.com to learn of our crisis and see in action what this organization helped do for just one family. With enough funding, this organization could continue to assist many families. To this day, their support cannot be replaced.
My hopes are that they will be able to assist every family that runs into the same situation.

The Great!

I've personally experienced the results of this organization in...

yes

Ways to make it better...

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

provide more funding

February 4, 2011
2 people found this review helpful

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Review from Guidestar
February 4, 2011
2 people found this review helpful

PANDORA is always at the forefront in advocacy on behalf of people with neuroimmune disorders.

The Great!

I've personally experienced the results of this organization in...

On the patient forum I belong to I have often read of the great work PANDORA does. I am inspired to participate more myself in advocacy.

Ways to make it better...

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

I can't suggest changes.

February 3, 2011
1 person found this review helpful

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Review from Guidestar
February 3, 2011
1 person found this review helpful

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.!

The Great!

I've personally experienced the results of this organization in...

P.A.N.D.O.R.A. supports awareness-raising projects. Recently they helped raise money to buy an ad in the Washington Post about ME/CFS. There was also a blurb from the ad that appeared on a huge sign in Times Square in New York City. These efforts help government officials and the public understand the devastating nature of NEID's and the need for increased funding.

Ways to make it better...

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

If they had more funding, they could do even more.

February 2, 2011
1 person found this review helpful

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Review from Guidestar
February 2, 2011
1 person found this review helpful

PANDORA rocks hard! They do a lot with a limited budget. Noone takes any salary. PANDORA lobbies in DC and state capitols- successfully. One nei disease center has been set up in NJ. They are working on one in FL. They fundraise in the general population- walk a thons etc- make grants for research. Their brand of advocacy is effective and ME patients are in dire need of it. PLEASE SUPPORT PANDORA ANY WAY YOU CAN! Thank you!

The Great!

I've personally experienced the results of this organization in...

Increase research and clinical activity on ME around the USA.

Ways to make it better...

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

Make it bigger! Please help with your financial and other support!

November 25, 2010
1 person found this review helpful

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November 25, 2010
1 person found this review helpful

I am a member of PANDORA and have been for many years. This organization does many amazing things for the very sick with neurological, endocrine and immune system diseases and disorders. To my knowledge there is NOT another organization that is helping all of these very sick people in so many areas. The head of PANDORA, Marla Silverman, is a CFS sick person who knocks herself out daily trying to do what is best for the entire community as well as individuals in desperate need. PANDORA has provided the infrastrcutre (financing through PANFORA) for a new "Democratic Advocacy" for those with ME/CFS. This group is called ME/CFS Worldwide Patient Alliance. I am a volunteer in this group and we have raised money to get a 1/2 page AD in the Washington Post alerting the US and international public about ME/CFS and the newly discovered and infectious third human retrovirus. In four short months, this advocacy group has over 1,600 members and has raised over $10K. This is an amazing achievement. Ms. Silverman came up with the idea of a patient-driven/patient run advocacy and it has worked. It was what the very sick wanted: to have their voices heard by the governments and the public. PANFORA and Marla Silverman have had an enormous and critical impact on the neruoendocrineimmune sick. PANDORA and Marla Silverman are well known and highly respected in the communities they work within. There is no negative comments or changes that need to be made. PANDORA is a model for what a non-profit SHOULD be doing.

The Great!

I've personally experienced the results of this organization in...

This organization is helping to get my family and myself the government funding for major research on a very serious and life-destroying disease. I voluntered to help with PANDORA and the ME/CFS Worldwide Patient Alliance because of the steller reputation of the organization and the people behind the organization. Millions would have continued to be sick without PANDORA's constant efforts to help all of us. PANDORA has given a major presence to all of the invisible sick who are bedridden, housebound.

Ways to make it better...

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

Get them more funding to continue to do the many things that they are involved in. Millions of people depened upon PANDORA to help them as individuals. Millions more depend upon PANDORA to get the governments to do their jobs and get funding for critical research that affects every single person worldwide.

More feedback...

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

What one change could this group make that would improve your volunteer experience?

There are NO changes that I would make to this group. It operates in the most effective manner I have seen as a non-profit or a for-profit. Again, this organization is a model for all other non-profits.

Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)

My volunteer experience has had a profound effect on me. I was given a way to help get funding for critical research, clinical trials, and public promotion. This gave me "power" and a voice in getting what is needed for the disease that both my husband and I share. The people associated with PANDORA are all the most decent, kind, caring and super bright, hard-working and effective people I have encountered. I have made real friends and this has helped me not to feel so isolated and alone. I have a purpose even though I am terribly sick. This need for being "of value" and having a purpose is part of being a human. We need to be needed and we want to be a part of something important and that helps many other very sick people. Also, trying to do fundraising and having to communicate has in fact helped my brain (I have severe brain damage). PANDORA has given me and many people like me a real sense of purpose. We know we are making major changes that help countless millions of terribly sick people - many of whom are in dire shape, living on the streets, without and medical care, and are at the point of suicide. PANDORA and Marla Silverman have literally stepped in and stopped those at the end and without hope - lives have been saved and many more lives will be bettered and saved.

How did this volunteer experience make you feel?

This volunteer experience has been wonderful for me. Again, I am useful and have a purpose even as a very sick person with severe cognitive problems. It does not matter that I am so very physically and mentally limited. PANDORA and the staff are gentle, calm and patient with me and others as we all try to do our volunteer work. This aspect of being careful and concerned about your volunteers is important and many non-profits seem to forget this aspect. Those that volunteer for a non-profit also need help and support so that they CAN volunteer. I and many other people continue to volunteer for PANDORA and their causes on an almost daily basis. That is rather telling. We STAY with this non-profit because we fervently believe in what it is doing and can actually see all the work being translated into very real good.

When was your last experience with this nonprofit?

2010

November 4, 2010
1 person found this review helpful

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November 4, 2010
1 person found this review helpful

P.A.N.D.O.R.A. is a committed organization to advocacy and research. though they are small, they are mighty and always consider the patient first above all else. I appreciate their involvement in political and research indeavors, and keeping the community well informed. It is obvious their compassion is from the heart. They let no stone go unturned, and for that I am eternally grateful.

The Great!

I've personally experienced the results of this organization in...

I've been perssonally involved with this organization through advocacy efforts.

Ways to make it better...

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

I wouldn't change a thing about this organization.

November 1, 2010
1 person found this review helpful

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November 1, 2010
1 person found this review helpful

I enjoy volunteering for P.A.N.D.O.R.A. during their patient- medical conferences and helping them in the volunteer office. I also have participated in their Quality of Life Advocate Program (Pay Forward) by decluttering the homes of individuals with NEIDs. P.A.N.D.O.R.A. is filling a huge gap in the advocacy and creating awareness in the state of Florida and beyond. It is good to help others at a time when they needed the most.

The Great!

I've personally experienced the results of this organization in...

helping out the community in the South Florida Area.

Ways to make it better...

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

I would hope they would get more donations for the cause they advocate and for the work they do.

More feedback...

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?

A lot

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?

2010

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3 hours of volunteer time for this nonprofit will...

Help with filing in the office. Mailing letters to congressmen, participate in the physician grass roots campaign "Doctors need to know"; post our advocacy programs an efforts by sharing them with Facebook, Twitter and other community patient forums; make calls and or e-mail to patients who are homebound and lonely. Volunteer