About the Myotubular Myopathy Resource Group


The Myotubular Myopathy Resource Group, Inc, is a not-for-profit organization formed for the following purposes:
  1. To establish parent to parent connections for advice, support and advocacy. This disease is not as rare as is generally believed; we have now located approximately two hundred cases in the U.S, Canada, U.K and elsewhere..
  2. To establish physician to physician connections to create shared learnings about successful (and unsuccessful) medical interventions and treatment plans. With the proper interventions, the outlook for these kids is not as dark as once believed.
  3. To link families and physicians with researchers interested in this disease. There is ongoing research on this disease both in the U.S. and in Europe. The key to diagnosis, carrier identification and -- hopefully, one day -- treatment lies in getting DNA samples from affected families into the hands of the researchers.
  4. ​This web site contains more information about this disease. If you would like additional information or are aware of affected families interested in our efforts please contact us.













Support for this home page and for much of the work we do is made possible through a generous contributions from the BP Global Social Investment, part of BP.  In early 2001, we received our third grant from them as part of their AVP program. Thanks!

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 10 Mar 2001. 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.

If you have a congenital myopathy, please make sure to register in our patient registry.  With rare diseases every family counts!  Click "REGISTER NOW!" to go to the registry.