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Review for Cornelia de Lange Syndrome Foundation, Inc., Avon, CT, USA

Rating: 5 stars  

Gregg was diagnosed with the Cornelia de Lange Syndrome in 1965 at the age of 6 months in Seattle by Dr. David Smith, the first doctor to publish on this syndrome in the U.S. Little was known about CdLS at that time. No services were available for Gregg and there was no CdLS Foundation to offer us support. How we wish there was! We felt so isolated. It wasn't until the early 80's we learned of the Foundation through the Exceptional Parent magazine. From that time on we have benefited from the great support of the CdLS Foundation. We have attended 12 national conferences and one international conference. Through these conferences we have learned so much and enjoyed the friendship of CdLS families, the Foundation Staff, the Scientific Advisory Council, and Educators. I had the privilege of serving on the Board of Directors for 3 years which deepen my appreciation of the Foundation and the support it offers families. We only wish we could have had that support the first sixteen years of Gregg's life. He is now 53 years old and still loves to go to the national conferences.

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