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The Charcot-Marie-Tooth Association
October 11, 2011

This "charity" is exactly NOT charitable. While the Board President has a financial and legal mess of a life, the Executive Director is pulling in a salary of $190,000 plus benefits. 2 staff were fired (one was paid to keep quiet) the other had to file with the Dept. of Labor to get her overtime wages. A member of the Medical Advisory Board resigned because he doesn't like the way this organization is headed. The organization closed it's office "to save $" but continues to spend thousands on travel and sending a staff person to Italy. Now staff "work from home" and work very little.Research has not produced enough and is way off schedule. Do not donate unless you thoroughly read all tax, IRS and Annual Reports. This organization continues to raise funds from sick and disabled people who live on fixed incomes and barely have enough to meet there own needs. Entire Board and Executive Director should resign. Then maybe services for the people can resume.

The Great!

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

Las Vegas, Philadelphia

Ways to make it better...

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

Call for immediate resignation of Board President, re-establish, office, hire new staff and rewrite mission statement. Gradually encourage Board Members to resign, then re-establish a new Board. Redesign website.

More feedback

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

Badly

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

A little

Will you recommend this organization to others?

No

When was your last experience with this nonprofit?

2010

What is unique about this organization?

They are liars and cheats. Very controlling, dysfunctional and clickest group.

MY ROLE:
Professional with expertise in this field & I was a Support Group Leader and raised funds for research.