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CMT-Support · CMT- Friends and Support

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Description

Charcot-Marie-Tooth Disease (CMT) is the most common Hereditary Neuromuscular Disease known. It is also known as "Hereditary Motor-Sensory Neuropathy" (HMSN). About one in 2500 people or 2,551,875 people have one of many different forms of CMT world wide.

In this group, we share our feelings as well as life's ups and downs. The latest research, mutual support of people with CMT, their friends, families and medical professionals.

We share good days and the bad as well. If you are dealing with CMT in your life in some way, then it is our hope that you will join our group of caring-sharing people.

Our founder stated: "I may have started this group, but it is a group of and for the members."

Sadly Lamar Stephenson RNC, our founder- passed away 01-10-04. His hopes - dreams were to educate those with CMT and the public about it, to support research in finding a cure and/or better treatments for us all. To also help insure that future generations will not have to suffer with this disease, as we have. We strive to continue his dreams, here at CMT-Support.

Prior to losing Lamar, we also lost two dear friends of the CMT Community, our moderator, Kathleen 'Kat' Lopp Smith in Sept of 2003 and Roslyn 'Roz' Levenstein who at the age of 81, was author of our motto, Get Up-Get Dressed-Get Out. On 3/19/08 we lost Our Dear friend and Moderator, Alice Hilton. 4 VERY special people gone, but not forgotten.

This site WILL continue on- in Memory of, Lamar, Kathleen, Roz, and Alice.

Group Owner:Becky M. Group Moderators:Tina T. - Kay S. - Erin K. - Sharon C. - Jenn R-S LOGO by: Susan Kinney

Disclaimer

This site does not engage in offering medical advice or professional opinions. The information provided here is designed to help support, not replace, the relationship that exists between a patient and their physician or healthcare provider

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Re: any pediatric "CMT docs" at Hopkins?
Hi, where do you live in central VA? I am in culpeper..... there is a MDA clinic in DC....Just check the website... I am way older than your daughter but have
Posted - Wed May 23, 2012 12:46 am
Leanne Kelly
lkelly58
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any pediatric "CMT docs" at Hopkins?
Hi all, We live in central Virginia and are looking for a pediatric neurologist who is knowledgeable about CMT for our 8 year old daughter who has CMT type 1b.
Posted - Tue May 22, 2012 9:30 pm
bfstraka9
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Re: Hello, new here
good morning. I dont know what serial casting is - had to google it - but i was diagnosed soooo long ago they thought they cured me - hahahaha LOTS and LOTS
Posted - Tue May 22, 2012 3:42 pm
Leanne Kelly
lkelly58
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Hello, new here
Hi, my 9-year old daughter was officially diagnosed with CMT1A about a year ago. She walks on her toes and has very tight thigh and calf muscles. She also has
Posted - Tue May 22, 2012 2:24 am
vrrotate
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Re: CMT 1B
Thank you, Geri. J. Craig Horan General Manager, Commercial - Tubulars NA United States Steel Tubular Products 281-671-3796 O 214-507-0331 C jchoran@...
Posted - Wed May 16, 2012 5:14 pm
Craig
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