from: gopher://val-dor.cc.buffalo.edu:70/00/.national.info/.directory/.dir.orgs.b2char Charcot-Marie-Tooth International (CMT) 1 Springbank Drive St. Catharines, Ontario, Canada L2S 2K1 (416) 687-3630 Disabilities Served: Charcot-Marie-Tooth (CMT) disease, also known as hereditary motor and sensory neuropathy, and peroneal muscular atrophy. Users Served: Disabled persons and their families, health care professionals, researchers. The Organization: Charcot-Marie-Tooth Disease/Peroneal Muscular Atrophy International Association, Inc. (CMT International) was founded for the purpose of helping those with Charcot-Marie-Tooth disease better cope on a day-to-day basis with this inherited, progressively debilitating, neuromuscular disorder. CMT International provides information about the disease, usually in the form of a bimonthly newsletter. Special pamphlets are also made up from time to time, and a CMT International brochure is also available. When possible, funds are made available for research on Charcot-Marie-Tooth disease, and primary research is often done through questionnaires in the CMT newsletter. The questionnaires go out to more than 2,000 members and act as a base for further research development, but priority is the person with the disease. Support groups are scattered throughout North America, England, New Zealand, and France. CMT International's head office maintains a list of advisors from which referrals are given to people desperate to find professionals interested in and knowledgeable about CMT. A yearly Sophie Abarbanel CMT Educational Assistance Award of $1,000 (Canadian) is awarded to a CMT person in financial need who wishes to further his or her secondary education. A biennial convention is held, usually in Canada, but in 1992 it will be held in England. Miniconferences organized by the head office are held periodically throughout the United States and Canada. Information Services: CMT International publishes an information brochure that goes out to professional offices and support groups as well as the CMT Newsletter, a six times yearly publication for persons with CMT, their families, and professionals. Pamphlets and booklets available are: (1) From the Knees Down, a 36-page booklet listing sources to find special shoes, slippers, orthotics, custom shoemakers, etc., for those who have problems finding proper foot coverings; (2) Charcot-Marie-Tooth Disease as a Disabling Disorder, a reprint of a journal article by CMT International Executive Director, Linda Crabtree, from the Canadian Family Physician; (3) Bracing Available for the CMT Foot and Ankle, a 12-page compilation of past articles from the CMT Newsletter on orthotics for people with CMT; (4) The CMT Traveller, a pamphlet listing travel aid sources for people with disabling disorders. The organization also has a yearly index for the newsletter as well as all the CMT Newsletter back issues (more than 30). Copies of journal articles referring to Charcot-Marie-Tooth disease are also offered. The newsletter provides up-to-date information about possible treatment, possible medications, genetic and medical research. It also gives experimental reports of how members of CMT International cope from day to day with their disability. The newsletter also stresses new orthotic implementation for legs, feet, arms, and hands as well as work that is being done on CMT breathing and anesthetics. Questions from people with CMT are answered by doctors serving as advisors with CMT International, and there is also a column for teenagers with Charcot-Marie-Tooth disease. The executive director of CMT International has CMT and is also a rehabilitation counselor. She is available by phone, Monday through Thursday from 10:00 a.m. till 4:00 p.m.