Re: CMT is not MD

[Guest guest]

It is classified as a Neuromuscular Dystrophy and research is funded by the MDA,

but.......... http://www.mda.org/disease/cmt.html

I guess it really doesn't matter. That had nothing to do with my question and

was just someone who had to be right. Way to go! Thanks for your positive

input.

[Guest guest]

Didn't mean any harm..just want people to know it is not the same..

I'm Not JUST SOMEONE THAT " HAS " TO BE RIGHT..Even though I am this time!!!!!

[Guest guest]

Yes,

Thank you

From: [mailto: ] On Behalf Of

gfijig

Sent: Tuesday, August 31, 2010 7:51 PM

Subject: CMT is NOT MD

Lori, hi,

To clarify, Charcot Marie Tooth disease IS but one of many types of

neuromuscular disorders. But it is NOT the same as Muscular Dystropy,

Multiple Sclerosis, ALS, etc.

For many years, the Muscular Dystrophy Association has 'housed' about 40

neuromuscular disorders under their wing. Some people with CMT go to MDA

clinics for medical care, because those Drs. may be more knowledgeable. MDA

also used to provide AFOs for people with CMT, but no longer.

Yes, Abbey Umali, the little girl with CMT, is once again the MDA Ambassador

for the telethon. The MDA has done research on CMT and still does.

In explaining CMT, I have a standard line: Charcot Marie Tooth syndrome is a

neuromuscular disorder characterized by peripheral neuropathy (feet and

hands) I go on from there, depending on how much time I've got. lol

As for National CMT Awareness Week, that is seperate from the MDA telethon

and is a venture from the Charcot Marie Tooth Association. Like I said in a

previous post, is also contributing effort to spread CMT Awareness

during that special week.

Both the MDA and the CMTA raise funds for research.

does NOT raise funds. (although people have wanted to donate!)

I hope that clarifies things a bit.

Gretchen