Sotos Syndrome Support Association
                             
                     

SSSA NOTES

January 2013

 

In This Issue
Christopher
Tell Us Your Story
SSSA on YouTube
Parenting after Sandy Hook
Order DVD/Handbook

"Sotos plays 

a role in our lives"

 

Mom's story about her son Christopher

 

My son, Christopher, was diagnosed with Sotos Syndrome in May 2010 when he was 17 months old.   He was a late walker (19 months), a late talker (22 months) and had hypotonia.  I had just started to get my arms around the impacts of Sotos Syndrome when he became ill with viral encephalitis from the flu in March 2011.

 

Click here to read more about Christopher....

 

  christopher


2013

SSSA Conference

Bloomington, MN

July 12-14, 2013

 

 

 Thinking about whether your family should attend the Sotos Syndrome Support Association Conference?

Here are some 

frequently asked questions and a peek at what Minneapolis 

has to offer.

  downtown minnesota

 


Tell Us Your Story

 


Find Support. 

Give Support.

Learn Something. 

Teach Something.

 

GET INVOLVED!! 

 

Send your comments, book reviews or a story about your experience to us for inclusion in the SSSA Notes:

 

newsletter@sotossyndrome.org

 

No access to email? 

Send submissions to:

SSSA

Newsletter Submissions

PO Box 4626

Wheaton, IL

60189

 

 

 

 You too can be included in the SSSA Notes! Send in a paragraph about what is happening in your life with a photo and watch for your story in an upcoming SSSA notes.


 


 

Make a tax deductible donation to the SSSA TODAY!!

 

  

To donate using PayPal, 

click on one of the

 dollar amounts below.

 

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To donate by check

Mail to:

SSSA

P.O. Box 4626

Wheaton, IL  60189

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THANK YOU!!

 

 


SSSA on 
YouTube
 

 

 

 

 

 

"WATCH OUR INFORMATIONAL VIDEO ON YouTube"

 

Now available on YouTube - 

thanks to SSSA member Richard Hilton - 

is our full 30 minute video  

 

Sotos Syndrome:

A Journey from Diagnosis Through Life.  

 

     Learn the general characteristics of the            syndrome. Hear of other parents' reaction when their child was first diagnosed. 

 See children and adults with 

Sotos syndrome play and interact.  

Learn about the genetics of Sotos syndrome along with its reproduction issues.  

Gather advice on early intervention and expectations for the future from medical professionals who have studied the 

syndrome for over 20 years.

 

Purchase your own copy of the 

DVD by Clicking Here

 

Make the title of the DVD 

in the first line of the article 

the link to click to watch the 

YouTube version.  

 

 

Here is the link: 

 http://www.youtube.com/watch?v=vcGMTjUaGtY 

 

 

 


Misled

 

 

 

 

 

 

 

 

* from the editor:

Kody Toney is a Partners in 

Policymaking classmate of mine.

Father of Konner, a child with autism, 

  he writes a column for a local Oklahoma newspaper called "Pervasive Parenting".

 

Pervasive Parenting

By Kodey Toney

I have been praying the last two days for the families, victims, and even the shooter in Connecticut. I have recently seen that he may have had autism or Aspergers-like symptoms. Let's get something straight; whether he did or did not have some type of autism does not mean that this is why he committed these senseless crimes. 

 

 

 

  partners

visit us on Facebook        click here          

 

 

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

 

william hawaii

 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!