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Charlotte

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PATIENT ALLIANCE NEUROENDOCRINEIMMU DISORDERS ORG FOR RESECH & ADV INC
October 31, 2010

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.

MY ROLE:
Volunteer & Most recently, staged a non-violent protest before a government advisory committee.