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MEandmyShadow

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PATIENT ALLIANCE NEUROENDOCRINEIMMU DISORDERS ORG FOR RESECH & ADV INC
July 24, 2013

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

MY ROLE:
Volunteer

The CFIDS Association of America, Inc.
October 5, 2011

I began 5 years ago with this debilitating illness looking for help to understand what I was experiencing. No physician will help or even acknowledge the Name of my demise. CAA was front and center with information on their website, I began to follow. Over the 5 years, my health is worse, I can no longer work, and I can see that this organization is more about gaining funding to keep their jobs, and be the beloved puppy for the CDC & CFSAC Committee. CAA is more about carrying out the mission of denial, disgrace & destruction toward those who are out in the field trying to find the bio-markers, diagnostic tests & any hope of medication or treatment. I seriously don't see they are interested in advocating for the needs of people with this debilitating illness. They don't even have enough respect to change their name to acknowledge Myalgic Encephalomyelitis (ME) which is the real deal here. They seem to be more of an attack dog for the CDC to sabotage progress. My intuition is rarely wrong, and I have been unable to accept any information that comes from the CFSIDS Assoc. as legitimate progressive support for a growing, yet rapidly tragic future of recovery.

The Great!

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

When at the NIH State of the Knowledge Workshop last April, 2011. I happened to sit next to CEO Kim McCleary that day. In making light conversation during a break,she was dismissive and arrogant. I knew, she wasn't interested in any feedback I could offer of the presentations we had just heard. I felt I was not the person she was representing as CEO of a Patient Advocacy Group. When she gave her presentation, it was clear who she is working for by the comments she made pandering to those who send her $$$.

Ways to make it better...

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

1)Get the name right, its ME, as in Myalgic Encephalomyelitis! For an advocacy group you are 30 years behind. 2)Reorganize with more funding directed to Patient Needs than CEO Salaries and marketing to discredit their perceived competitors, those researchers "who are trying" to discover the real medical findings to get us back to work. 3)if you are going to stroke the CDC , at least show that you have made a difference in actual progress toward more than having an insider seat & a voice at a meeting.

More feedback

How would you describe the help you got from this organization?

A little

How likely are you to recommend this organization to a friend?

No

How do you feel you were treated by this organization?

Badly

How did you find this group?

Disgraceful, demeaning and oppositional.

What, if any, change in your life has this group encouraged?

Increased confusion, worse health status and discouragement knowing that they are behind the attacks on the organizations who need funding to make a difference. They are simply selfish.

When was your last experience with this nonprofit?

2011

MY ROLE:
Client Served & 15 years as a Licensed Certified Social Work-Clinical Therapist for the Chronically, Severely Mentally Ill .

Review from Guidestar