Charcot-Marie-Tooth Association

My family and I have been involved with the CMTA both as volunteers and clients served. I was diagnosed with CMT 2E 13 years ago at the age of five. I am a first generation CMTer; no one else in my family has the disease. Because of this, when I was diagnosed, my parents knew close to nothing about CMT. The CMTA has been instrumental in educating my family and I about CMT through their patient/family conferences and numerous educational resources. They have also been very helpful in shaping my perspective and view of my CMT. I have had the privilege of attending multiple CMTA youth outings where I spent the evening bonding with other teens with CMT while participating in fun activities such as the Escape Room, bowling, and dinner. I also recently attended CMTA Camp Footprint, an overnight camp for kids and teens age 10-18 with CMT. We participated in many activities such as zip lining, rock climbing, canoeing, nighttime hiking, dancing, swimming, and much more. Both the youth outings and the camp showed me the beauty and hidden gifts that come with having CMT and increased my drive and determination to try new things outside of my comfort zone. I'm so thankful for the CMTA for giving me such empowering, enriching experiences.

Another way that my family and I are involved with the CMTA is through volunteering as Branch Leaders. A year ago, there was no CMTA support/information group for people with CMT in my location so my mother and I decided to start one. We hold multiple meetings a year where we bring in guest speakers from various medical professions and other organizations. Our goal is to provide our members with as many helpful resources as possible. We also hold one fundraiser a year to help support STAR and other invaluable CMTA initiatives. The positive feedback we have received from group members has been incredible. The CMTA has been instrumental in helping us start and maintain the Branch. They are always available to answer any questions or help with anything else we need. They work very hard to ensure the success of each branch.

It is clear from all of my experiences with this organization that they are passionate about their mission and are determined to find treatments and cures for this disease in the future. However, until a world without CMT is the reality, they are committed to helping people live happy, healthy lives with CMT.

My husband was diagnosed with CMT back when he was 13 at Allegheny General Hospital. Until I met him I had never heard of the condition. Our son was diagnosed back in 2004 at Children's National Medical Center with the same condition and there was no information available to me on the condition. When we moved to Nashville TN 10 years ago I was over joyed to find a CMTA support group here, who not only hand out information about the condition, but has also introduced me to many other people who have the condition and help me to understand the struggle they have.

I am so thankful for the CMTA as not only do they have reach out and interact with the families who deal with this condition, they also send their employees out to help teach us and our communities about the condition and they also sponsor the Vanderbilt Center of Excellence , fundraisers and now a camp for children who have the condition and research for a drugs to help with the condition.

I first discovered the CMTA when my son was diagnosed more than 8 years ago. Even though I also have CMT, there was so much I didn't know about it and the CMTA provided me with a wealth of information. We had a very beneficial visit with Dr. Shy and his associates at the Center of Excellence when it was located in Detroit. From patient and family conferences, webinars, website information and my 5 years as a branch leader, I've learned how my son and I can live better with CMT and about all the resources available to us. I also know that as a branch leader I've helped many others with CMT or their loved ones with CMT because of information from the CMTA I was able to pass on to them. I'm excited about the CMTA's new CEO and the continued efforts to accelerate research!

I joined the CMTA when I was diagnosed with CMT about four years ago. I have found it to be an extremely well run organization staffed mainly by individuals who either have CMT, or have a family member with CMT. The CMTA funds CMT research and also provides great updates on all scientific breakthroughs. New CEO Amy Grey is an experienced leader in the non-profit community and a welcome addition to a great team. The CMTA Board consists of the leading activists and researchers in the field.

If I could give less than 1 star I would. I used to volunteer and raise funds for the CMTA but I can't in good concious do that. I read their tax return every time it comes out amd every year is more ludicrous than the next. Patrick Livney's salary increases by at least $50,000 every year. Now his salary is $325,000!!!!! They bring in less than 4 million in revenue each year that's outrageous in itself but now the new tax return list 2more employees that make over $100,000 each. Now they spend over half a million on slararies alone. The ratings on these sites are jokes. It is not accurate to say they spend only $90,000 or % 5 on administrative expenses because that's where the salaries are supposed to be included. This charity needs to be investigated by the IRS. Livney makes almost as much as the CEO of the MDA and they pull over $150,000,000. I don't think people really look at the 990's they just look at this completely inaccurate review sites and take them at face value. This is wrong very wrong I urge you to look at their latest tax returns to see for yourself.

gleeful giving.
I give glee-fully. The age of technology has given us the unprecedented opportunity to peer into the lives of others - near and far. From animals to people. Children to the aged. Northern hemisphere and southern. Religious and non-affiliated. Eased and dis-eased. I have learned and listened, read and reviewed so many stories to the point these stories are what I care about the most in my social media timelines. To the point where my perspective has changed as I socialize with others. I am so inspired by those that create organizations to raise awareness for others asking for nothing in return - some who are dedicated beyond 'full-time'. And, for those in need, of course. Every $1, $5, $10 dollars - I am determined to make a difference. And am *hopefully* inspiring my son to do the same. After all, isn't that what this ride is all about?

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!!!

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

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.

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!