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November 1, 2010
1 person found this review helpful

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November 1, 2010
1 person found this review helpful

PANDORA is a charity which serves a very underserved and often neglected population of people. This group has advocated for both adults and children with NueroendocrineImmune disorders and is working hard to create only the second research and treatment center for several understudied and not well understood diseases.

The Great!

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

The spread of education and awreness of my illness.

Ways to make it better...

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

Make sure they had more fundraisers.

November 1, 2010
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November 1, 2010
1 person found this review helpful

I would like to personally review my experience with P.A.N.D.O.R.A which stands for Patient Alliance Neuroendocrineimmune Disorders where their help as been so timely and accurate for me. I had the most wonderful doctor (very unusual for patients of ME/CFS) since I was 24 years old. At age 33 my life would stop as I knew it. Similar onsets from so many with chronic fatigue syndrome. I was so very fortunate that my GP had the knowledge and empathy to help me deal with this devastating disease for 17 years. Sadly he became ill himself and had to retire. Thank God for P.A.N.D.O.R.A.!! They keep very accurate, current, and appropriate listings for specialists to treat all of my symptoms. I went through 2 months of pure hell feeling like a lone survivor on an island with no help. My doctor that had taken over for my prior doctor didn't have a clue how to treat cfs properly. I was very very scared. I couldn't believe that in 2010 there was so little correct information coming out of the mouth of my new provider! This is why P.A.N.D.O.R.A. became a saving grace. The information they provide, the accuracy and educational guides are so needed by our very ill community. Please choose them and help them get the correct knowledge out for physicians and patients alike. We are suffering and they are comforting! Please let them expand their vision to help all suffering with NEI diseases. Sincerely yours, Gina Giarrusso Bettor gbettor@gmail.com

The Great!

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

The finding of new caring physicians that rarely want to treat a chronic illness.

Ways to make it better...

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

I would increase their budget so they could do even more.

October 31, 2010
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October 31, 2010
1 person found this review helpful

PANDORA gives patient with neuro-endocrine- immune diseases HOPE. As a patient with ME/CFS, not many organization root our way and fight for us. PANDORA assisted a family in getting their son back from foster home. Ryan, a patient with ME/CFS has been removed from his home because it was thought that his parents were abusing him. Ryan and his family has done nothing wrong, and Ryan could not attends school due to a very disabling illness with a very demeaning name. PANDORA is working towards building, and getting funding for neuro-immune- endocrine illnesses, such as ME/CFS, FMS, Gulf War illness, and Lyme disease. They deserve recognition.

The Great!

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

Watching the work they've done with Ryan's family.

Ways to make it better...

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

Give them the budget to operate so they can help more people with ME/CFS and other neuro-immune- endocrine illness

October 31, 2010
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October 31, 2010
1 person found this review helpful

I am a disabled Desert STorm veteran with many of the chronic illnesses that PANDORA raises awareness for. I have had CFS and fibromyalgia since i was in Desert STorm. In 2005, i looked on the internet for an organization that advocates for sick Desert Storm vets. This one was the closest one i could find. They gave me advice and support by email and phone. I moved down to South Florida in 2007. BEfore my health took a downturn, i advocated for the foundation on Facebook and Twitter. Marly Silverman, the philanthropist and creator of this organization, also suffers from CFS. She works tirelessly and endlessly , going to meetings with doctors, government agencies, Congress, etc,. She organizes petitions, sets up fundraisers, anything you can think of, she does it.

The Great!

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

They asked to use my story on a brochure they have coming out. It is such an honor and i know it will help many other veterans.

Ways to make it better...

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

not change anything except get more volunteers.

October 31, 2010
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October 31, 2010
1 person found this review helpful

I have severe ME-CFS & have had the condition for 50 odd years now, it waxes and wanes. For what ever reason the government agencies have, on the whole, been dismissive of this illness since 1970. PANDORA seems willing to stand up to these agencies in a way that our other national group has not. In some instances they can be a little heavy handed but considering how lax the other national org has been, that might be a good thing. They will have to recognize that people must be allowed to choose what their own paths will be; but this problem could be due to the youth of the organization.

The Great!

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

A little early to expect results, but they have made great efforts & seem poised to do more. They are deeply committed to the cause & did assist in getting a boy reunited with his family after he had wrongly been removed by DSS.

Ways to make it better...

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

Have them see that reasonable people can disagree, and allow people to choose whether or not they want to participate in a given project. No one is right 100% of the time.

October 31, 2010

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October 31, 2010

I am a 49 yr old wife and mom, who has been disabled with ME/CFS/FMS/Lyme for 15 yrs. My family has been affected with numerous NEI illnesses. It’s important to me and my family that P.A.N.D.O.R.A. gets the support it deserves. Marly Silverman, founder of P.A.N.D.O.R.A. is the most committed NEI advocate I’ve ever met. I finally met her for the first time in Washington, DC at the October 2010 CFSAC Committee Meeting. Her work to create the NEI Center in NJ is inspiring. She has been instrumental in the returning of Ryan Baldwin home and helping his family raise money for the enormous legal and medical bills. P.A.N.D.O.R.A. has created the MCWPA (ME/CFS Worldwide Patient Alliance), which is a volunteer patient organization, primarily aimed at raising funds for a major ad campaign. I am personally grateful for the service P.A.N.D.O.R.A. provides.

The Great!

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

In a matter of a few months over a thousand supporters and $8,500 have been raised for the MCWPA on FB Causes! Patients and their families want to make a difference; it's inspiring!

Ways to make it better...

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

I really can't think of anything. Perhaps provide more NEI background, symptoms, research, etc. on the website.

October 31, 2010

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October 31, 2010

PANDORA and founder Marly lead a sincere effort to boost hope where many MDS, many government officials and some NGOs have already raised hands up in the air or are in plain denial. Foundations like PANDORA keep the hope alive which often makes dreams become reality. Thank you Sincerely C. Kesta Executive Producer / Director "The Chronic Pain Educational Documentary Series" http://www.head2toe.tv

The Great!

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

By talking to Marly and by witnessing the results of her efforts.

Ways to make it better...

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

Provide them with more funding

October 31, 2010
1 person found this review helpful

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October 31, 2010
1 person found this review helpful

I am a board member and ex-President for a CFS/ME Association and I am proud to be working with Pandora to help bring awareness and education to CFS/ME/Fibromyalgia patients and the general public. Everyone at Pandora are dedicated, caring and professional individuals who are fighting hard to bring recognition to very misunderstood illnesses. They are always happy to reach out to anyone in need and work with any organization that helps people with Neuroendocrine-Neuroimmune illnesses.

The Great!

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

Several advocacy and education efforts and conferences

Ways to make it better...

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

give them more funding so they could further their mission....

More feedback...

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

What is unique about this organization?

Although many in the organization are fighting illness themselves, they still have the ability to reach out and help so many people...

When was your last experience with this nonprofit?

2010

October 31, 2010
1 person found this review helpful

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October 31, 2010
1 person found this review helpful

I met Marla Silverman, the founder of PANDORA many years ago. She has dedicated her life to us, the patients with neuroendocrine-immune diseases. This organization has helped me in so many ways. To know that there is a team of people getting together grassroot efforts to advocate on our behalf is such a comfort. They are fighting for our rights and making doctors and the government aware of our plight. They also are constantly educating people as to the quality of our lives in order to improve them. I would love to be out there marching along with them, but I am too sick. I love that I can watch them march for me, usually even designating a chair or a placard for those of us who can't be there. Also, in the almost 20 years I have been ill, the workshops and support groups that PANDORA has sponsored, have pulled me through some extremely difficult times. PANDORA has served our NEIDS community and me in more ways than I can say. It is a wonderful organization and deserves your consideration. Thank you.

The Great!

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

There is always someone to answer a question or fill in a void. They are working on my behalf on many issues that effect me in every way. I have gone to PANDORA at some very dark times and they have helped me through them.

Ways to make it better...

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

Get additional funds for them so that they could hire more help to continue their excellent work.

October 31, 2010
1 person found this review helpful

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October 31, 2010
1 person found this review helpful

It's not hard to describe the comfort, love and understanding this organization gives to so many as support. "PANDORA" rises above all the rest. I'm an Advocate Extrodinaire and proud to be part of PANDORA and their mission. As a patient "52" years of age with a condition called "EHLERS DANLOS SYNDROME" it falls under other related disorders. Not knowing what I had until the age of 48 - the loss of my home,job,husband and eventually benefits. No one believing in me was an emotional and physical struggle I wish on no one. Yes diagnosed at 48 and born with the condition. Pandora and it's staff/volunteers supported me and still do to this day with e mails and phone calls from time to time. If I ever need to reach out they are there to listen and have BIG shoulders. Being single is something I've accepted as some see us in public as defected. We are not - my companion dog "Stitch" helps me with company. Marly - founder is a beautiful person and deserves to shine above being noticed for her efforts. I sincerely hope that one day people in public will not judge for looking healthy and patients being so sick. It will be a great mission to get our court system and government to believe in people like me that look healthy and are so ill. It may be hard to understand but God created us all equal as his children just some he made a little more special. For me life now has no boundries and challenges for I can! I can do anything for I believe in myself because of foundations like PANDORA that have given me the hope, dreams and possibilities we all can! Any one person that may feel alone and lost when it comes to ME/CF/FM I sincerely hope you will take the time to join in the efforts TOGETHER WE CAN. THANK YOU PANDORA - centralfleds@gmail.com

The Great!

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

so many ways...

Ways to make it better...

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

have more people donate their time and money

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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