Sotos Syndrome Support Association

SSSA NOTES

Online Registration is Open!

 

 

Photo of DVD and Handbooks
Order DVD or Handbook Now!

 DVD:

A Journey from Diagnosis Through Life

 created by the SSSA

$5 + shipping

This 30 minute video contains interviews of doctors, families and individuals with Sotos Syndrome, explaining the basic characteristics, experiences and expectations of their journey. 

 

Buy Now           

 

                          
 

 

A Handbook for Families

(Third Edition) 

$15 plus shipping

 

  English     Spanish       

  Buy Now       Buy Now

This 64-page soft-bound booklet includes:
A Description of the Syndrome
  • The Newborn Period
  • Infants and Toddlers
  • Young Children
  • Adulthood
  • Differential Diagnoses
  • Genes and Hereditary
  • The Role of the Schools
  • Community Resources
  • Siblings and Families
  • The Wider Community
  • Coming to Terms

 Medical and Developmental Evaluations

  • Genetics
  • Central Nervous System
  • Internal Organs
  • Muscle
  • Skeletal System
  • Endocrine
  • Hearing
  • Speech and Language
  • Eyes and Vision
  • Development and Intelligence
  • Behavioral and Psychiatric

  

 

  To order the DVD or Handbook by check, please visit our site.

 

 

 

Book/DVD Order Form
 

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Mail to:

SSSA

P.O. Box 4626

Wheaton, IL  60189

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THANK YOU!!

 

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Send your comments, book reviews, or articles to us for inclusion in the SSSA Notes:

newsletter@sotossyndrome.org

 

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SSSA

Newsletter Submissions

PO Box 4626

Wheaton, IL

60189

 

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Vancouver, Canada

July 20 - 22, 2012

  Becky Anderson Presentation Omaha

Registration for this summer's Sotos Syndrome Support Association Conference in Vancouver, Canada is now open!
 

Please visit our website or click here to register online.  You will have the opportunity to pay using Paypal or pay with a check.  Remember, we accept only U.S. funds (Paypal will convert your currency for us).   

You can browse the SSSA website for more information about the conference or if you have questions, please e-mail us at conference@sotossyndrome.org.

Past attendees will tell you that there's nothing better than meeting fellow Sotos families face-to-face!
"Top 10 Reasons to Attend the Conference" 
from our Members

 "The ... conference met and exceeded my expectations. I went to [the conference] feeling confused and worried about my son's future and now I feel confident and hopeful. I recommend anyone whose child has Sotos to come and experience a conference as soon as possible." 

 

"The first [lecture we attended] was with Dr. Schaefer. After about thirty minutes into his presentation, I wrote a note to my wife saying 'This first thirty minutes of his presentation was worth the cost and time of the trip.'"

 

"I definitely feel as if this trip laid the foundation for future success not only for [my child] but for our entire family."

 

"Attending the conference gave us a much better picture of what to expect than any book or physician." 

 

"I felt like I was in a world that accepted my little boy."

 

"I have felt "out of sorts" since the birth of my daughter 7 years ago. For the first time in 7 years I felt like I was the mom of two "typical" kids."

 

"Experiencing the seminars and the fellowship at the conference was very helpful to me as a sister of a Sotos child. It helped me better understand my brother."


"When it came time for my family to meet with Dr. Cole, we felt a sense of relief. He was the first professional that I have ever talked to that knew what Sotos syndrome was. He confirmed the diagnosis and answered questions I had wanted to have answered for so long!"

 

"Our son had a great time in childcare and made new friends."

 

"Childcare was especially helpful because we could rest assured our little one was in goods hands while we relaxed and listened to all the speakers."

Childcare Omaha

 Disclaimer:  The SSSA does not endorse any of the medication, diagnostic procedures, treatments or products reported in this email newsletter.  The information is intended only to keep you informed.  We strongly advise that you check any medication, procedure or treatment with your physician.

 

 

Donate to the SSSA every time you search the Internet or shop online at select sites!!!

 

Search the web with Yahoo-powered GoodSearch.com and they'll donate a penny to the Sotos Syndrome Support Association when you designate the SSSA as your cause!