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Re: Lenka's story

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Gretchen,

Unfortunately, I think I got the percentage information from the MDA

site, but I'm not tracking it down now, so I will have to quest for

it or take it out if I can't verify where I found the information.

I'll keep you posted :)

The information connecting CMT to MD is from charcot-marie-

tooth.org. They write in their about CMT page: CMT is one of the

40 diseases covered by the MDA, but unlike muscular dystrophy, in

which the defect is in the muscles, CMT is a disorder in which the

defect is in the nerves that control the muscles.

I will try to make it more clear that CMT is not a form of MD,

though I am confused. What is the connection, then? Why is CMT

covered by the MDA if it isn't " like " the other diseases covered by

MDA?

I would like to know, as I speak to people, because I don't want to

spread misinformation, and I know you have been involved with this

type of research for a long time. I do honor us as having our own

challenges. I'm trying to make sense of it myself.

Thanks for your feedback,

Lenka

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