|Myotubular Myopathy Resource Group, Inc.
2602 Quaker Drive
Texas City, TX 77590
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
One day Myotubular Myopathy will be extinct like the