MOEBIUS ADULTS: WE NEED YOUR INPUT

As many of you might recall, the Moebius Syndrome Foundation has created a new position.  The MSF Board has voted to create the office of Board liaison to the Moebius adult community.  I am pleased to announce that the Board voted to have me be that liaison.

We did this for a few reasons.  We believed that there were those in the Moebius adult community who would like to have more interaction with the Board and what it does.  Plus, we believed this was a good idea--to reach out more to Moebius adults and to find out what they are thinking.

We envision the liaison then as doing the following: first, he will periodically reach out to the Moebius adult population via social media--for example, through Facebook.  I will ask what adults are thinking about, what issues are important to them, what we as a foundation can do better, and so forth.  We will also, every three months or so, have conference calls on which any Moebius adult who wishes to can participate.  This will be via a toll-free number which we will provide to participants.  I and (when possible) other MSF Board members with Moebius will also participate in those calls.  We plan for these to last perhaps an hour or so, and of course all callers who wish to speak will be given the chance to do so.

I will then, every month or so (or more often if necessary) compile the feedback I have received in regular reports to the Moebius Syndrome Foundation Board.  The liaison will simply report to the Board the feedback he's been given.  He will not censor it or edit it.  If a Moebius adult has something that he or she wishes to say to the Board, the Board will receive it.

In addition of course, that having been said, it will then be up to the Board to decide what to do, if anything, with the feedback it receives.  The Board has many things to consider, it has many points of view to take into consideration, and often it has difficult and complicated decisions to make.  The Board hopes that everyone in the community will always keep this in mind.

But also, the Board wants to hear from you.  That is why it has named me as this liaison.  And it will take all of the feedback it receives seriously.  So therefore I want to hear from you.  Let me know what you are thinking, and what is important to you. 

And now, I am also glad to announce that our first conference call, for any Moebius adults who would like to participate, will be coming up soon. We will have our first call this coming Wednesday, May 6th. The call will begin at 8:00 pm east coast time; that's 7 pm central time (and Texas time!; 6 pm Mountain time; 5 pm West Coast time. All you need to do is either message me on Facebook, or e-mail me (ksmant@gmail.com) and I will let you know what the number is to call, etc. If you have Moebius friends who are not on Facebook who might like to participate, please let them know, too. Thanks everyone--we want you involvement and your feedback!