Sotos Syndrome Support Association
                             
                     

SSSA NOTES

December 2012

 
In This Issue
SSSA Dues
Carol Richey Fund History
Tell Us Your Story
Order DVD/Handbook

SSSA Dues
 

 

 

The holiday season is here 

which means the New Year 

is approaching. 

The New Year signifies that members will need to pay their 2013 membership dues to remain active members. 

The membership dues is $35

and can be paid by Paypal

  

 Buy Now  

  

 

Dues can also be mailed to:

SSSA 

P.O. Box 4626 

Wheaton, IL 60189

  

I would also like to remind members that if their family name, address or email address has or will be changed, 

contact us with the 

changes at:

Membership@sotossyndrome.org  

 

Happy Holidays,

James Gardner

Membership Coordinator 

 

 

 

 

 

Make an end of year

 tax deductible donation to the SSSA TODAY!!

 

  

To donate using PayPal, 

click on one of the

 dollar amounts below.

 

$10  $20  $50  $100 
 ______ 

To donate by check

Mail to:

SSSA

P.O. Box 4626

Wheaton, IL  60189

_______

 

THANK YOU!!

 

 


conference photo 1
Talia Goertz and Mom 
SSSA Conference, Vancouver 2012

Who is Carol Richey? 
 

 

 

 

 

 

 

 

Carol Richey Memorial Fund

 

For those members who ask....... who was Carol Richey? Carol was the mother of a child with Sotos Syndrome and one of the original families which eventually became the SSSA. 

please click here and read more about this incredible woman.........

 

Originally written by former SSSA President, Jean Dowe, for our 2005 newsletter.

 


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.

 

 


 

 

 

Happy 

New Year!

 

from the 

SSSA board &

SSSA notes staff



newman
This is a picture of Avery Newman this fall at the orchard.
Avery is 3 1/2 and had a great time picking apples and broccoli at our local orchard in Maryland.  
She especially enjoyed wheelbarrow rides from her dad:)  
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

 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!