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September 1999 Newsletter

Most of our efforts these past several years have been on creating this website and talking over the telephone with many families.  Growing concerned that we are not keeping our friends and families without access to the internet up to date, we decided that, in lieu of a newsletter, we would send an updated, printed copy of all the material on our website to anyone that desired one.  Below is the letter we have been mailing out to everyone for which we have a current mailing address.

 

Myotubular Myopathy Resource Group, Inc.
2602 Quaker Drive
Texas City, TX 77590

409/945-8569

Newsletter!

We've been struggling to get out a newsletter for a long while, but we just couldn't seem to make it happen. It seems as if most of our energy has been put into our son, John, and maintaining our website on the internet.

Our site (www.mtmrg.org) has been a great success. We get ten to fifteen visits a day. We have a lot of new information that many of you may not have seen.

As our long overdue newsletter, we would like to send everyone that does not have internet access a copy of all the material on our website. This is a lot of material, probably fifty or sixty printed pages total.

To cut down on printing and mailing costs, we would like to send a copy of the website to people who really want it and do not have access to the internet. We have enclosed a post-paid card to send back to update our files. If you need us to mail you a copy of the website, just let us know on the card. Please complete the card and return it so we can update our files. If you have internet access, please check the web site every month or two to see what has been added under the section "What's New".

As more people get internet access, we hope to keep MTM families updated by this method. We know more than 200 MTM families and the internet is a much easier way to get information to so many people. If you have email, please let us know so we can send you a note to tell you when we update the website.

New families really do like to read the family stories. We will be happy to add your MTM story if you would like to share it with others.

Thanks for your help and please keep in contact with us and let us know how you are doing, address changes, etc. You are all in our prayers every night.

Pam, Gary and John Scoggin

Myotubular Myopathy Resource Group

Remember……One day Myotubular Myopathy will be extinct like the dinosaur.

*The post-paid card mentioned in the letter is available as the family registration page.

 

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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 06 Sep 1999. 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.