Sotos Syndrome Support Association



SSSA NOTES

July 2013 

 

 
In This Issue
SSSA Friday Night Conference Highlights
Saturday Conference Highlights
Tell Us Your Story
SSSA Conference Speaker's PDF's
Sunday Conference Highlights
Our Story of Success
Order DVD/Handbook

 

 

2013 
SSSA Conference
HIGHLIGHTS
in pictures
Bloomington, MN
July 12-14, 2013
FRIDAY NIGHT
  

   

new family
MEETING NEW FRIENDS
Andy, Angela and Karter Torres
 
old friends
HANGING OUT WITH OLD FRIENDS
Kelsey Weick and Kelsey Gilbertson

 

VISITING WITH 
WONDERFUL FRIENDS
Jane and Iliff Peck 

 

auction  
AUCTION READY!
 
items bought at auctionITEM BOUGHT!
Hannah Dugan holding 
her beautiful picture
 
 
FRIDAY NIGHT ENTERTAINMENT
Teddy Bear Band

 

 

 

2013 
SSSA Conference
HIGHLIGHTS
in pictures
SATURDAY
  

FIELD TRIP PLANS:

NICKELODEON UNIVERSE 

at the Mall of America  

fieldtrip
READY!
Spence Ross and Austin Swafford
 
fieldtrip   
Megan Boers and Evelyn Hefner
riding Ghost Blasters
 
 
CHILDCARE FUN!
childcare fun 3 
bubbles 
William Masson enjoying bubbles 
 
childcare fun 2 
Bubbles are FUN!
 
 
SPEAKERS
mother daughter 
Emily and Linda Starnes 
 
ready for the next speaker  
Coffee Break. Who's next?
 
speasker 1Got Vision?
Dr. Jill (Hadler) Schultz 
 


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

 

Would love recent pics and a blurb of what your child is doing for the newsletter.

 

 

 

Make a tax deductible donation to the SSSA 

TODAY!!

 

  

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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!!

     



NEED BABY PICS

Start finding and 

then sending 

your cute baby pictures 

preparing for an upcoming

BABY ISSUE

 

 newsletter@sotossyndrome.org

 

  
visit us on Facebook          click here          

 

 

2013 SSSA Conference

Speaker's

 presentations

 

 

  

 

PHOTOS

 

 

 Click on link below 

to see photos from

the conference

Shutterfly share site

  

goodbyeGood bye for now.

Until Arkansas......... 

  

 

 

2013 
SSSA Conference
HIGHLIGHTS
in pictures
SUNDAY
  

  


SUNDAY BREAKFAST
breakfast
Ron and Karen Constant
with Spence 
 
 breakfast 2
Steven and Linnea Dugan
and Family
 
meeting  SSSA ANNUAL GENERAL MEETING
Great turnout
 
panel
ADULT SOTOS PANEL
 
 
HOW WAS THE CONFERENCE?
thumbs up  
 
 michelle
Thank you Michelle!
 

 

 

 

"Our Success Story"
by Laina Hicks

    

 

baby stevo  

 

I am the mother of a 

21 year old Soto's son. 

I joined the open group on Facebook, 

posted some pics and have 

had an overwhelming response 

to send pictures of our success story. 

In brief, Stephen was born in 1992 

in Sacramento, California to 

Steve and Laina Giordano. 

We have been to 2 SSSA 

conferences; one in Seattle 

and the other in Anaheim. 


click here to see Stephen's 
"success story"... 

    stevo

Stephen's senior picture

 

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


slp and william

William Hefner and Lauren West 
at Sunday breakfast.
Not "good-bye", but "See you in Arkansas!"

 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.

 
 

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