Guest guest Posted April 14, 1999 Report Share Posted April 14, 1999 >To: chiariegroups > > >>Date: Thu, 08 Apr 1999 21:22:40 -0400 (EDT) >> >>To: SHELTONCOB@... >> >>Thank you for your interest in our research efforts in Chiari type 1 >>malformation and syringomyelia. Our work is centered on determining >>whether or not there is a genetic component to the development of >>these disorders. Currently, we are interested in speaking with families >>in which more than one member has Chiari type 1 malformation and/or >>syringomyelia; our definition of " family " includes aunts, uncles, >>grandparents, parents, children, and cousins. >> >>We are also interested in families with only one person with CM1 and/or >>syringomyelia in which both parents would be available for a blood sample. >> >>If you fit into either of the above categories, please respond via our e-mail >>address (please put the words " Chiari study details " on the subject line), >>call us at or fax us at , and we will provide >>you with the details of study participation. >> >>Please note that our research is concentrated on studying genetic >>causes of Chiari type 1 and syringomyelia. With research as our >>primary focus, we are not in a position to communicate medical advice. >>If you are seeking specific information regarding clinical or surgical >>outcomes, or are interested in obtaining information about particular >>institutions or physicians, please refer to: >> >> American Syringomyelia Alliance Project (ASAP) >> P.O.Box 1586 >> Longview, TX 75606-1586 >> tel >> or >> National Organization for Rare Disorders (NORD) >> P.O. Box 8923 >> New farfield, CT 06812-8923 >> tel >> >> ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
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