Try this web site
http://www.ultranet.com/~smith/CMTnet.html
They list:
Charcot-Marie-Tooth Association (CMTA)
Previously called The National Foundation for Peroneal Muscular
Atrophy (NFPMA)
Address:
Crozer Mills Enterprise Center
601 Upland Avenue
Upland, PA 19015
Telephone 610-499-7486 (note new area code)
Founder: Howard K. Shapiro, PhD, biochemist
President: Diane M. Freaney
Diane Franey email address: [log in to unmask]
- and -
Charcot-Marie-Tooth International (CMT International)
Address:
One Springbank Dr.
St. Catharines, Ontario, Canada L2S 2K1
Telephone 905-687-3630 (note new area code)
FAX 905-687-8753
Office hours Monday through Thursday 10:00 A.M. to 4:30 P.M.
Founder and Executive Director: Linda Crabtree
Business Manager: G. Ronald Book
Administrative Assistant: Dorothy L. Campbell
Newsletter:
CMT Newsletter
Editor: Linda Crabtree, journalist
First Issue: 1984
- and -
Muscular Dystrophy Association (MDA)
CMT is not a form of muscular dystrophy. However, since the Muscular
Dystrophy Association (MDA) included CMT in their set of 40 neuromuscular
diseases, information about CMT can sometimes be found under the heading
of muscular dystrophy.)
Address:
National Headquarters
330 East Sunrise Drive
Tucson, AZ 85718-3208
Newsletters:
Quest
Editor: Bob Mackle
(602) 529-2000
First Issue: 1994
Editor:
First issue: 1992
MDA Reports
Editor: Robert Mackle
First Issue: 1992
MDA Access
First issue: 1992
Support groups:
Northeastern Massachusetts Chapter of the Muscular Dystrophy Society
20 Conant Street
Danvers, MA 01923
508-777-0333
Eastern MA Patient service coordinator: Marcia Randall 1-800-730-0318
Other MDA locations are TBD.
On Wed, 10 Jan 1996, Lynn Powell wrote:
> Is anyone aware of a support group or foundation for Charcot-Marie-Tooth
> disease? I have a patron in need of a telephone number or address. One of
> our physicians told me he is rather certain there is such a group. If you
> could provide any information relating to this group or foundation, I
> would be very appreciative. TIA.
>
> Lynn Powell
> Halifax Memorial Hospital
> Medical Library
> 250 Smith Church Road
> Roanoke Rapids, NC 27870
>
> [log in to unmask]
>
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