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

 

Welcome!

The Sotos Syndrome Support Association is very proud to bring you our website. It has been compiled from the contributions of members of this association. We hope that it adds value to your understanding of this syndrome and the people who are affected by it. Please drop us a note and let us know what you think.

Our Mission

  • A social support environment for professionals and families of individuals affected by Sotos Syndrome so they can meet, exchange ideas and help one another cope with the condition.
  • An understanding of the condition through education.
  • A quarterly newsletter for members to network ideas, articles, and inspirations.
  • An annual meeting in which to meet, organize, and discuss association business.
  • An annual conference for professionals and families to hear experts in genetics, neurology, psychology, and education.
  • An opportunity for professionals working with individuals affected by Sotos Syndrome to collect data for research and to meet colleagues.

A few words of wisdom from parents of children with Sotos syndrome:

boyboy"... A support group, whether it be a group of moms who get together for coffee or a national support group, is a must. I have never felt so in touch with others as I have since being involved with the Sotos Syndrome Support Association. It's very reassuring to know others have experienced the same problems and lived to tell about them. I was just told the other day that my 4-year-old was a good role model for a family's little baby girl. Words cannot express how that made me feel!"

"Sotos is not the end of the world. Get all of the information you can. Read it. Study it. Share it with the teachers, therapists, doctors, whoever deals with your child. And remember: Everyone is different and everyone has strengths and weaknesses. Find your child's strengths and go for it!"

Sotos Syndrome Support Association of Canada

SSSAC/ACESS was incorporated January 2002 to provide educational and emotional support to Canadian families of persons with Sotos syndrome and to provide a better understanding to parents, government and the public at large of Sotos syndrome (Cerebral Gigantism) through education. You can also contact the SSSAC by email.