Tommi Orchards by PVII

SSSA 2013
Conference

July 12 - 14
Bloomington, Minnesota

Registration is now open!

Sotos Gene Discovered

Our esteemed Medical Advisory Board offers their coordinated point of view to help us understand what this means for all of us.  The goal of this letter is to inform parents, provide perspective and look to the future. 

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The Tommi Melon

 

2010 SSSA Conference

July 9 - 11, 2010

Arlington, Texas!

 

The twenty-third annual SSSA conference was held in Arlington, Texas on July 9 - 11, 2010. There were fifty-four families in attendance including 104 adults and 52 children. Forty-two of the attendees had Sotos syndrome ranging in age from 1 through 38. Returning families renewed friendships while first-time attendees experienced the relief and sense of belonging upon seeing another child that looked and behaved just like theirs for the very first time.

The weekend started with a casual family dinner on Friday evening followed by entertainment. Children of all ages were heard enthusiastically shaking their instruments and playing with their puppets along with entertainer Mister David. On Saturday, Drs. Cole and Schaefer drew rave reviews as usual for their highly informative and practical talks on Sotos syndrome. Families also had the opportunity to hear speakers on trusts and guardianship issues, early intervention, behavior management, reproductive issues in Sotos syndrome and how to get the most out of IEP meetings. While the adults attended the lectures and meetings, childcare was provided for all children including a trip to Six Flags amusement park for the older children.

A worthwhile weekend was had by all. As one attendee said, "I can't believe how much support, information, and bonding can happen in a [48] hour period."