MOEBIUS TEENS: WE NEED YOU
So I've been talking lately on this blog about various issues of interest to lots of people, but issues I think that especially are relevant to teenagers:  when people stare at you; about getting a job (eventually); etc.

But let's broaden this out a little bit and talk about this in a wider context.  I don't think enough people have said this, but we need to say it more:  when it comes to the general Moebius community...when it comes to the conferences put on by the Moebius Syndrome Foundation every two years...teenagers with Moebius Syndrome, we need you, and we need your input.

I think it would be especially great if more Moebius teens came to the conferences every two years (a goodly number come already; but we need more).  But if you're a teen and you've never been to a conference, maybe you wonder:  why should I go?  Isn't it just a bunch of older people sitting around talking about medical issues?  Will a bunch of people stare at me and put me under sort of a spotlight, and want to focus only on my Moebius and not on the person I really am???  I know that can be an issue.  As a teen, you want to fit in.  You don't want endless focus on how you're different.  You're not comfortable with it.

But the thing is--at the conference, that's not what happens.  There will be other teens there, who have the same thing you do.  But you don't have to endlessly talk about that.  You can hang out together, and have fun...and do so knowing that your peers at this conference won't stare at you or think you're strange.  Wouldn't that be a great thing?  Don't you want to hang around others who know what you're going through?  And if you want to, you can talk about Moebius; and do so knowing that those to whom you're speaking know all about it.

You should know, too, that at the conference there are activities designed just for teens; and there are sessions designed just for those who have Moebius--teens, adults, you name it.  We talk about how to live life with Moebius, how to survive, how to prosper.  There are other sessions as well; but there are sessions and activities for everybody.

And maybe we can make the conferences better, make our community better and more supportive, whether it be on Facebook or other social media sites.  You know what we need?  We need you to tell us what you want, and what we can do for you.  So contact us.  Tell us.  Tell me.  Contact the Moebius Syndrome Foundation and Vicki McCarrell, and tell her how we can make the conferences better.  Talk to us on Facebook, through MoebiusConnect, through the Many Faces of Moebius Syndrome site.  What can we do?  We want to know.

When I was a teen, there was no community such as this existing.  There was nothing.  I don't know what I would have done if there had been one.  But I think it might have helped; and this one can help you.  So don't be shy.  Reach out...and if you do so, you'll feel that smile coming from everyone's heart. :+)