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Information That We Need

There is a lot of untapped wisdom out there.   We'd like to collect all we can.  But there are a few items of special interest that we'd like feedback on.  

  1. From families that have had carrier or prenatal testing: 
    What laboratory did the test? 
    (We'd like to develop a list of laboratories that have done this.  We are aware of the University of Chicago but we'd like to know of others, especially ones in Europe.)

  2. From families that have experienced scoliosis surgery:
    What procedure was used, Harrington, Lukie(sp) or other? What was the outcome?
    (We'd like to be able to provide more information on this important topic.)

  3. From families that have experience with this:
    What programs are available in your state to help defray medical and related costs?
    (This is a question we get asked a lot and don't have any good answers.)

  4. For families that have done this:
    What special financial planning have you done?
    (Recent changes in the law make this even more important.)

 

 

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Copyright © 2000 by the Myotubular Myopathy Resource Group, Inc . Information on this website may be redistributed and copied freely provided that proper attribution is given.  This page was last revised on 29 Oct 2000. The Myotubular Myopathy Resource Group, Inc. is a not-for-profit organization under Section 503(c) of the IRS Code. These World Wide Web pages are published by the Myotubular Myopathy Resource Group, Inc. solely as a service for interested parties. This is a lay interpretation and should not be considered definitive by any means. This discussion draws largely from the sources cited as well as the personal observations of the authors. We are neither doctors nor experts nor do we pretend to be. Any decisions on medical treatments, interventions, courses of action, etc. should be made by the appropriate family members in consultation with the available literature and qualified medical professionals. Good sense should always prevail. The authors, contributors and the Myotubular Myopathy Resource Group, Inc. assumes no responsibility for the use of the information, observations or opinions presented herein.