Sotos Syndrome Support Association


SSSA NOTES

March 2013

 

 
In This Issue
SSSA 2013 Conference
United Way Gifts
Order DVD/Handbook
From the President
Kelsey Weick
Teen/Young Adult News
New Member News
Tell Us Your Story

 

 

2013 
SSSA Conference
Bloomington, MN
July 12-14
 


Online registration for 

this summer's Sotos syndrome conference has now started. 

 

The conference is hosted by the

 Sotos Syndrome Support Association (SSSA) and it will be 
held in Bloomington, Minnesota 

on July 12 - 14. 

  

Click here for Hilton 

Minneapolis/St. Paul Airport

-Mall of America 

Hotel information.

 

 *Make sure you
 request the 
"Sotos syndrome" rate.
  minn2



 

United Way
&
SSSA
  

 

Do you already give to 

United Way???

 

If you donate to United Way through your company, why not direct those funds to a charity that 

you are involved with???  

 

The SSSA is a 501(c) (3) tax exempt organization through the IRS.  

In the fall, when your Human Resources Department hosts a United Way campaign, ask them to 

direct the funds to the

 

 Sotos Syndrome Support Association, P.O. Box 4626, Wheaton, IL 60189.  

 

If your employer needs our 

Tax ID number or documentation necessary to prove our 

tax exempt status, 

just contact the SSSA at treasurer@sotossyndrome.org 

or call our toll free phone line 

(888) 246-7772 

and we will be glad to send you the supporting documentation.

 
Joanne Weick
SSSA Treasurer
 

 

 

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

 

Make a 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!!

 

 

william vinita       
visit us on Facebook        click here          

 

From the President

Monica Jacobs

 

Happy "Bra Monica cket" Time and for those of you that don't follow college basketball.....

the NCAA College 

Basketball Tournament! 

The craziness began last weekend with several upsets and a few "Cinderella" teams making it to the "Sweet Sixteen" this weekend. 

 

I love this time of year, even non-basketball fans find themselves entering a bracket and watching some games. I always end up cheering for the "underdog" and then when the championship game is over, have tears in my eyes as I listen to the "One shining moment" song and watch the video of the boys playing in the tournament, their laughter, tears, sweat and celebrations. 

 

It makes me want to put together a 

video of our children who have  

Sotos syndrome.....with all of their various emotions. What would the perfect song be? 

 

Hmmmm.......maybe this is something that can be completed this summer at the conference? 

If you have some ideas, please email me at www.president@sotossyndrome.org 

 

Last month I mentioned the 2013 conference in Minneapolis...

Click here to view proxy

 

Kelsey

 

 

  kelsey 2

 

Kelsey has been riding horses since she was 5 years old at a 

therapeutic riding facility. 

 

She is now 21 and riding has helped her develop her hobby, increase muscle strength and improve her skills and sense of responsibility. 

 

Currently she rides 4 times a week and works at the barn helping other children at least 5 hours per week.  

 

click here to read more about Kelsey and therapeutic horseback riding ........

 

 

   kelsey 1

 

 


Young Adult/
Teen Corner
 

 

 

Young Adults and Teens!

Want to 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 newsletter.

 

 


Click here to view proxy

 

New

Member 

News

 

 

 

Kathy Sheridan 

lives in Rochester Michigan with her son, Ryan M. Sternberg.

 

Ryan was diagnosed at 3 months 

old by a geneticist that worked with 

Dr. Sotos. 

The diagnosis was made on appearance and measurements.

 

Kathy writes, " When Ry was little, I was a member of the SSSA, attended a few conferences and helped set up the conference in Michigan years ago. I was even the editor of the 

SSSA Newsletter at one time."

 

Welcome back Kathy!

Thanks for all of the help you have given to the SSSA.

 

Hope to see you at the upcoming conference in Minneapolis July 12-14!

  

 

 


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.

 


 

 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!