Dear Friends,

We the board members of the Many Faces of Moebius Syndrome are putting together a World Wide Moebius Syndrome Address book so that we can hopefully get a proper accounting of everyone with Moebius Syndrome.  We are asking all of the moebius syndrome families to send us their names, phone numbers, address,  and email addresses.  Once we get this information it will be kept private and not shared with any other group, or institution.  Your information will not be sold. If a moebius family asks us for the address of another moebius family we will only give out the information once that family has been contacted and has given their permission. We will not be sending you mail or emails on different ways you can raise money for us so we can help you better. Once we become a non profit we may from time to time send you information on upcoming projects we are undertaking.  If all goes well we may send you information on how we can work together as partners to raise money and awareness for all things moebius related.

The Many Faces of Moebius Syndrome website had over one hundred thousand hits last year. So potentially one hundred thousand people viewed the site. We are on track to do more than that this year. The Many Faces of Moebius syndrome has been recognized as a important member of the moebius syndrome community from groups such as The Children's R.A.R.E. Disease Network, The Cleft Palate Foundation, Faces: The National Craniofacial Association, About Face, and others.

The goal of the Many Faces of Moebius Syndrome Website is to be the best we can be. You saw a little of what we can do on January 24 2011.  We're just getting started!!! Please send your information to us at manyfacesofmoebiussyndrome@yahoo.com If you have any question please feel free to email any of the board members.  We started this a couple of years ago because we want to make a positive difference. We started this because we want to help.  We welcome your questions, suggestions, opinions, and criticisms.

Thank You,

Tim Smith
Donnie Downs
Gavin Fouche
Andrea Sweetwood-Smith
Kay Von Willingh