Guest guest Posted February 28, 2003 Report Share Posted February 28, 2003 Posted on Wed, Feb. 26, 2003 Chester group taking aim at CMT By Larry Eichel Like most medical conditions, the one now diagnosed as afflicting the 76ers' Todd MacCulloch has an association devoted to research and treatment. And that association happens to be close at hand. The Charcot-Marie-Tooth Association, founded 20 years ago by a biochemist who lives in Narberth, operates out of offices in an assisted living center in the city of Chester. With a staff of two full-timers and two part-timers, the association publishes a newsletter six times a year, raises money, awards research grants, and works with support groups in 23 states. The group is preparing to host its first-ever North American CMT Consortium at the end of next week in London, Ontario. " It's always been one of our sadnesses that no name person has ever been connected to CMT, " said Pat Dreibelbis, who edits the newsletter. " We're certainly not pleased that Todd now has it. But this is the way that a condition comes to the attention of the public. Unfortunate, but true. " Foundation staffers have not yet been in touch with MacCulloch. But they would like to make contact, see what they can do for him now, and determine whether he would have any interest in working with them later. The progressive and debilitating condition, which affects an estimated 150,000 Americans, was discovered in 1886 by three physicians: Jean-Marie Charcot, Pierre Marie and Henry Tooth. The association was established in 1983 by K. Shapiro, then and now a researcher at the University of Pennsylvania Medical School. Shapiro has CMT himself, as do other members of his family. " This 'disease' is really a syndrome, " he said yesterday. " It is a clinical picture of patients experiencing progressive weakness in the arms and legs, but there are several different underlying biochemical causes. " When he set up the organization - in part to keep his own CMT research alive - Shapiro initially called it the National Foundation for Peroneal Muscular Atrophy, which refers to one of CMT's other names. At the time, he felt that using a name with the word Tooth in it would confuse people, since CMT has nothing whatsoever to do with teeth. ============================== Kat Seattle WA USA http://www.icewindow.com Quote Link to comment Share on other sites More sharing options...
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