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- From: Marilyn.Johnson@f1.n3608.z1.fidonet.org (Marilyn Johnson)
- Newsgroups: misc.handicap
- Subject: Ablenews Welcome
- Message-ID: <26303@handicap.news>
- Date: 20 Jan 93 17:21:33 GMT
- Sender: news@bunker.shel.isc-br.com
- Reply-To: Marilyn.Johnson@f1.n3608.z1.fidonet.org
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- X-Fidonet: Able News Conference
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- Index Number: 26303
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- [This is from the AbleNews Conference]
-
- RS>Thanks for the info. Will try to find a copy. The form of MD my wife has i
- RS>Charcot-Marie-Tooth. Both her father and brother have it as well as an uncl
- RS>We have been unable to find any females who have this except my wife.
- RS>Does anyone know of any females who have Charcot-Marie-Tooth form of
- RS>MD?
-
- HI!
- Quite a few women have Charco-Marie Tooth. I believe it was first
- classified in a woman! MDA covers this form of ataxia because there is
- often muscle atrophy in the later stages. There is another
- organization that has lots of information on this, the National Ataxia
- Foundation, 750 Twelve Oaks Center, 15500 Wayzata Blvd, Wayzata, MN
- 55391. (612) 473-7666 This year's annual meeting will be in Houston,
- TX, March 12-14. Another organization is National Organization for Rare
- Disorders, but I have little information on that.
-
- Other places of information include the Index Medicus which lists
- medical journal articles. They can be found in libraries of colleges
- with nursing schools (Gulf Coast Comm. Coll. at least used to have it)
- and of course medical schools, but it is a *slow* process. (The jour
- als indexed that you want are never there--but there is always
- inter-library loan. You may have to pay for copying). You can order
- computer searches at medical schools, but need to know the proper key
- words to get any information. The National Library of Medicine in
- Washington, D.C., is terrific--you can run your own computer searches of
- books and journals on their "in-house" computers. They also have a way
- those with modems can access their files, but I didn't have a modem when
- there and haven't got such a system set up yet.
-
- Had a very good chat with you wife (we are in the same area!), but
- have decided to post this anyway in case others are interested.
-
- Let me know about the new paper.
- TTYL, Marilyn
-
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