Moebius1.org
Moebius 'Warriors' International

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Moebius1.org has been asking for comments, written experiences, volunteers, pictures and members. We have received tremendous support, encouragement and some very kind
words from almost everyone we have ‘met’.

In the short time I have been involved with the Moebius Community I have been very
fortunate to make the acquaintance of so many determined individuals. One in particular
has been instrumental in my Moebius education. At times, overwhelming me with
information. (...and I think, testing me.....)

Moebius1.org, the web site, is merely a passable job of ‘webmastering’ and I do not expect any job offers in the near future. It is a hobby. Moebius Syndrome is not a hobby. It is real, and forever - permanent. At least for now. There is the ‘smile surgery’ that can certainly do
much to address the emotional impact of Moebius and research marches on, as it is a necessary part of scientific and medical progress.

But for the parents of the children, the individuals with Moebius and family members, it's a full time job and there seems to be a lack of ‘how to’ information. They need the answers now and for the most part are finding those answers by trial and error, or by support group involvement. They are indeed explorers of a frontier.

One thing common to all explorers is the documentation of the journey. Why document? To make the trip easier for the next person.

Nearly everything in this world comes complete with directions. You can take it home and read the directions.  With a modicum of effort you can successfully operate the device. Even when there may be 'some assembly required'.  Moebius Syndrome does not come complete with directions. Nor do many other conditions.

Moebius1.org is one of the devices that can be used to publish 'the directions', the support mechanisms and the resources.  We want you to share with us so that we can document and hopefully provide better, more complete 'directions' to the ‘next guy’.  Make the most of your experience.  This also doubles as a support function, we all run the risk of actually benefitting from the interaction. That would be quite a bonus.

Please take the time to write down your experiences, feelings and things you learn along the way.   The question I see most often asked in the written documents is "Has this ever happened to anyone else, or anyone else's child...."  I'm talking about things like...WHAT happened, HOW did you feel, WHAT was the action you took, WHAT was the solution or outcome, etc..... I doubt that many of us if any, are qualified to wade into an ocean of medical terms, diagnosis, prognosis, indications and the like.  But, I think we certainly do know what went on, how we felt and what we did about it.  That's what the 'next guy' needs to know.

We want to include all ages and all aspects of the family relationship as well as social interactions. We want to hear from individuals diagnosed with Moebius Syndrome, parents of Moebius children, family members and friends.  Any
age,.......... any time. No detail can be considered trivial.   And send pictures!  I know that Samantha’s mother desperately sought a ‘set of directions’ with little time to find them. Probably not possible to attend a PTA meeting and run into a few dozen families down the block that are dealing with Moebius.

This is more than a week long exercise. What ever you have, when ever you find the time to jot something down.....send it to Moebius1.org. Maybe we can make it a little easier on the 'next guy’.

See Parent's Guide & Owner's Manual

Thank you,
TV,   Webmaster@moebius1.org

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