Oops! You must enter a search term greater than 3 characters.

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
48 Reviews
1234.958335
Previous | Next
Write A Review
July 24, 2013
2 people found this review helpful

more

July 24, 2013
2 people found this review helpful

When I first became ill with this devastating disease, the first information I took seriously was a few websites that had "Memorial Lists" of people who suffered greatly before their disease overcame them. However, P.A.N.D.O.R.A was the first Patient Centered Organization that I could trust for accurate, and hopeful education regarding my disease day by day. There was much support for me at all stages of my deteriorating health. As time went on, I was better informed to focus on all the ways my Quality of Life can be improved. This is a very frustrating illness to get medical care for, but with the help of P.A.N.D.O.R.A's long suffering expertise, I have grown immensely in understanding how my life can be stronger on a daily basis.

I have learned to be an advocate for myself and others thanks to Lori and Marly. I enjoy any opportunity to interact with the staff and Leadership of P.A.N.D.O.R.A. I believe with the coaching, advocacy, education opportunities and my own personal, individual assistance, my life has been greatly improved in spite of the illness. P.A.N.D.O.R.A enlightens HOPE for millions who seek them for comfort.

Ways to make it better...

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

If there were changes to be made to P.A.N.D.O.R.A I would work to gain increased financial support for the Organization so that more people can live as independently as possible without any diminished Quality of their Life. P.A.N.D.O.R.A's efforts to expand, EDUCATE full scale, and Support people with complex neuro-immune diseases is highly commendable. I know with more resources P.A.N.D.O.R.A's Mission for less suffering will prevail.

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

When was your last experience with this nonprofit?

2013

November 12, 2012
4 people found this review helpful

more

November 12, 2012
4 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.

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

When was your last experience with this nonprofit?

2012

November 25, 2010
1 person found this review helpful

more

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 1, 2010
1 person found this review helpful

more

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

October 31, 2010
1 person found this review helpful

more

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

more

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
1 person found this review helpful

more

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

October 31, 2010
1 person found this review helpful

more

October 31, 2010
1 person found this review helpful

I have had ME/CFS, a neuroendocrineimmune disorder, since 1990. The disease has left me unable to do much, but I continue to try to advocate for greater recognition and funding of NEI disorders such as mine. Over the years, I have seen many advocacy organization come and go. Others have lost touch with the patients they purport to represent. I was thrilled when I first came across P.A.N.D.O.R.A. because this is an organization with staying power. P.A.N.D.O.R.A. listens, considers, and carefully crafts messages to increase recognition and funding for NEI disorders. I am particularly impressed with the way it fosters collaboration among diverse patient advocacy groups. The result of this are strong messages with mass support behind them. I have worked on projects with P.A.N.D.O.R.A. and have seen the difference in government response due to the way it functions. P.A.N.D.O.R.A., in my opinion, will only grow in strength and influence because of the caring, sharing, coalition-building organization it is. And it is desperately needed!

The Great!

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

Better communication among advocates and willingness of government officials to engage in constructive dialogue with advocates.

Ways to make it better...

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

I would love to be able to give them a huge donation! This is a very worthy non-profit that does a lot with very little funding and could do so much more with more money.

October 31, 2010
1 person found this review helpful

more

October 31, 2010
1 person found this review helpful

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.

The Great!

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

it helped my daughter and gave me information and an avenue to pursue further action

Ways to make it better...

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

cooperate with other groups and any organizations necessary to develop a data base of all cfids/me patients. There is political and financial and intelectual strength in numbers and organization. Find a grant writer to get a grant to develop the database.

Previous | Next
Write A Review

Filter by reviewer role:

Support This Nonprofit

Help this nonprofit get more reviews

5 tips for getting reviews

5 tips for getting reviews...

  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
  2. Putting a link on your Web site
  3. Including a link in your email newsletter
  4. Putting a link in the signature of your email
    Putting a link on your facebook page and status updates
  5. Tweeting out a link to your twitter followers

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