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April 11, 2013

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April 11, 2013

When my son was diagnoses with CMT we had no idea what it was and the doctors in the Chicago area were not very helpful and had little knowledge of CMT. I started searching for information on the internet and found the Charcot-Marie-Tooth Association (CMTA).
The CMTA has been a wealth of
information since that point forward. I don’t know where we would be at this point if they did not exist. Thru the CMTA we now have a wonderful doctor, who is also a board member of the CMTA, Dr. Michael Shy, who we visit once a year in Iowa. Their website and newsletters have helped us so much thru the years. We have also had the opportunity to meet the other board members and have gotten to know the CEO of the CMTA, Pat Livney. Pat and each board member are very dedicated in finding a treatment and cure for CMT. Pat is the driving force and inspiration behind the CMTA. They are making remarkable strides to make it a reality for so many poeple effected by CMT. I know in my heart, after meeting Pat and all the members, that the CMTA will be the answer to helping my son and so many others that I know that are effective by CMT.
The CMTA has also helped me start a 'CMT Support/Action Group' in the Chicago area. I knew how much this was needed since it was so hard for me to find information to help my son. I have been a Support Group Leader for almost 5 years and have over 70 members. I can't tell you how many people come to a meeting for the first time and have never meet anyone before with CMT but have had it in their families for generations. It is wonderful to help so many and I would not be able to due so without the CMTA and all the information and guidance they provide.

Thank you CMTA!!!

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

April 7, 2013

I find it odd that the adress listed on Charity Navigator is in Chicago, yet on here, their website and all past IRS form 990s it's a p.o. box in Pennsylvania . They claim to be funding many research projects, ect, but do not give an accounting of grant amounts or who received them.

It concerns me that they have begun a 2 year 25 million dollar fundraising campaign. I haven't seen accountability on the monies raised on prior fundraising campaigns. They have never dealt with a project anywhere near this magnitude. They talk of collaborating, fostering research.... all well and good. How much funding do they provide to the organizations they collaborate with? The fostering of research, even when done by members of their STAR 'Scientific Advisory Board' and STAR 'Scientific Team' is funded by whom? I see a lot of smoke and mirrors and little else.

I am also concerned with Mr. Livney's qualifications as CEO. His education is not in finance and the issues that arose at Vanderbilt Capital Advisors when he was a managing director speak for themselves. It clearly was an issue when he ran for Village Trustee in Winnetka, IL. Here is a expert from the Chicago Tribune dated 10/23/2012 'Several Caucus members cited Livney's lack of local public service experience, and said his involvement in at least one ongoing New Mexico civil lawsuit, as well as a YouTube video of his comments last year at a local school board meeting, raised questions about his character.' The rest of this article is worth reading when it comes to a 25 millions dollar fund raising campain being lead by this man! http://articles.chicagotribune.com/2012-10-23/news/ct-tl-winnetka-caucus-council-meeting-20121023_1_winnetka-caucus-slate-youtube-video

More feedback...

Would you volunteer for this group again?

No

For the time you spent, how much of an impact did you feel your work or activity had?

A little

Did the organization use your time wisely?

Badly

Would you recommend this group to a friend?

No

When was your last experience with this nonprofit?

2011

October 11, 2011

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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.

October 5, 2011
1 person found this review helpful

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Review from CharityNavigator
October 5, 2011
1 person found this review helpful

this organzition has gone down hill fast. Especially since they fired their executive director, has no actual location and the current Chair/Board Member is their development officer and is taking a percentage of the funds to pay his salary which is against the law!

The Great!

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

services have decreased.

Ways to make it better...

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

bring back a physical office, staff and past board members and employees. the current chair isnt getting things done and is more concerned about his well being and cashing in on the company!

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