GUIDELINES
You may have noticed that the Moebius1.org site is putting something together
called
the Moebius Syndrome Parent's Guide & Owner's Manual.
The purpose of this project is to provide a resource for new members to the
Moebius Community as well as those currently dealing with Moebius Syndrome
on a daily basis.
In order to accomplish this task we are asking for input from all individuals
connected with Moebius Syndrome in any way, those diagnosed, parents,
grandparents, teens, kids, sibling and friends. We are not publishing
names in the guide and manual. We simply need information from those
that are familiar with the condition. This includes all age
groups.
If you decide to allow your child to write to us, we encourage you to monitor
and be a part of that exercise. There are no particular topics other
than what ever interests or is important to your child. We will collect
all input received and format it for publication on the site or other venues
as may be deemed appropriate.
We will not reply to any letters without a permission form on
file.
We will not list an email address without a permission form on
file.
Safety of the children is a paramount concern. Writing to this site
poses no particular threat to the child in our opinion. However, publishing
email addresses and the reception of email messages by a child should be
closely monitored by parents or legal guardians. We accept no
responsibility for the content of any message your child may receive if you
elect to grant permission to publish the email address of the child. We
encourage you to publish your email address and screen all messages
sent and/or received by your child. Please make us aware
of any problematic email that you or your child receives.
In addition, should this occur, we suggest that you contact the
proper authorities.
(We have talked with other sites and this does not seem
to be a particular problem.)
If you will allow your child to send us email there is no action to be
taken other than your interaction with your child.
If you intend to participate in the 'Kidsville Kids Email' program we require
a completed permission form prior to listing the email address.
If you have any questions or comments please forward them via the email link
at the top of this page.
Permission Form
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