You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.

This one is about: Opitz G Support - Opitz Family Network


(c) 1996 Wide Smiles
This Document is from WideSmiles Website - www.widesmiles.org
Reprint in whole or in part, with out written permission from Wide Smiles
is prohibited. Email: widesmiles@aol.com

Forwarded message:
From: wharton@rkymtnhi.com (wharton)
To: widesmiles@aol.com

Hello Widesmiles!

What a beautiful site on the web you have - and an even more beautiful mission!

We are the Opitz Family Network. Opitz-G/BBB syndrome is a midline and bilateral syndrome which often include a variety of clefts as one of its manifestations. These can be of the lip, uvula, palate, and LGE. Other common anomalies are hypertelorism (wide space between the eyes and other features), dysphagia (swallowing and feeding problems including reflux), hypospadias in boys, heart defects, agenesis of the corpus callosum (the large part of the brain which interconnects the two hemispheres never forms before birth), aspirations, hypotonia (low muscle tone), and many, many other midline and bilateral malformations, often overlooked in diagnosis. The amount of involvement of among individuals who have Opitz-G/BBB can vary greatly.

Our network was formed in June of 1994. Since then we have had contact with 75 families in 7 countries. We work with the cooperation of Dr. John M. Opitz, the world renowned geneticist who discovered these syndromes. We 
include families of individuals who have three different Opitz syndromes: Opitz-G/BBB (Opitz-Frias), Opitz-C (Trigonocephaly), and Opitz-FG (Opitz-Kaveggia). Each syndrome is uniquely different in its inheritance, but is enough alike in manifestations for the families to benefit from support from each other. We produce parents descriptions of the syndromes which are easy to understand, a parents glossary of terms and timely newsletters. We can also link families who have similar challenges. There is no fee for our network.

Many of our children have had clefts - all who have had surgery have had beautiful repairs. Our children are quite cute! Would you please relay information about our network to your members. We would love to have them join us.

Thanks for your help!

Jan and Willie Wharton
Opitz Family Network
P.O. Box 516
Grand Lake, CO 80447
970-627-8935 (if you donšt get us, leave a message and we will call you back - collect)

opitznet@rkymtnhi.com


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