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muffin04

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1 Reviews

What I want to do

Stop being sick and bedbound/housebound

What matters to me

Helping to get funding for research so that ALL sick people with ME/CFS/FM have a chance at a normal life.

What inspires me

Good people: Marla Silverman and Tina Tidmore. Those that are in far worse shape than I am and need help so terribly badly.

Hendersonville, NC USA

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PATIENT ALLIANCE NEUROENDOCRINEIMMU DISORDERS ORG FOR RESECH & ADV INC
November 25, 2010

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

MY ROLE:
Volunteer & Helped with fund raising for a critical cause that affects the world.