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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: looking for cmt penpals
i will write to you thank you ... From: Kathleen Douglas <kat_dog27@...> Subject: Re: [CMT-Support] looking for cmt penpals To:
Posted - Thu Jul 16, 2009 6:41 am
Cassie Mahoney
cassiemahone...
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Re: looking for cmt penpals
hey im Kathleen Douglas Im 25, married, n i have cmt type 1a really bad....looking for others to write to over the mail not email..  14192 hickory drive
Posted - Thu Jul 16, 2009 6:21 am
Kathleen Douglas
kat_dog27
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Re: looking for cmt penpals
Hi, Michael, I'm married, also, so I don't think I can write to you.  I hope you find someone soon. Lj ... From: cassandra mahoney
Posted - Tue Jul 14, 2009 2:55 am
Lana Jarvis
fyfer1949
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Re: lyrica
It was the same here. Lyrica was rx by the pain doctor for all the misery the CMT was dumping on me. Any relief is really appreciated, so I took it for a
Posted - Mon Jul 13, 2009 6:17 pm
Susan & David
susandavid33525
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Re: Increased severity over generations of CMT 1A
My mother is 68 and is just now experiencing the problems I was having at 36 yrs of age. My son is 19 and he is having bad problems already. So I have
Posted - Mon Jul 13, 2009 2:54 pm
Geri Melton
gerimelton
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