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Families


This section of our website is for affected families to tell about their experiences. Following are stories and ancedotes written by some of the families affected by myotubular myopathy.

The Scoggin Family; Texas The Shapiro Family, New Jersey
The Dawes Family, California The Grant Family, Vermont
The Furlong Family, New York The Beasley Family, Massachusetts
The Hughes Family, UK The Berlinquette Family, Ontario
The Villon Family, South Carolina Johnson Family, Wisconsin
The Robert Family, Australia Supelo Family
Feldscher Family, Ohio Steckler Family, Nevada
Barker Family, England

Below are some websites of affected families. 

Nathaniel Joseph
Supleo-Tordesillas
   Grant Family
Steen Lauritsen , Denmark   Abram Family, UK

MDA of Soutwestern and Central Virginia
Site run by Roger & Pat Schulz

Guidelines for Submission

If you'd like your story or website included here, please let us know.  We want to include as many different families as we can. Since we want to show the scope of the disorder, we want to publish good outcomes, bad outcomes and somewhere-in-the-middle outcomes. Simply stated: nobody's experience is inappropriate for this site.

Stories and photos can be submitted either electronically or in writing. Stories submitted in electronic format should be in Word, WordPerfect, .txt or .html format.   Pictures should be in either .gif or .jpg format.  We may have to do some minor re-formatting or editing to make your submission fit.

Also, bear in mind that submissions published here are available for all the world to see.  So, please use your own good judgment as to what level of personal details you wish to provide.  Also, please read our Privacy Policy before submitting your story.

 

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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 04 Aug 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.