Sotos Syndrome Support Association

SSSA NOTES

February 2013

 

In This Issue
SSSA 2013 Conference
Travel Guide to Support
From the President
Owen Eigenberg
What Shoes are you wearing?

 

 

2013 
SSSA Conference
Bloomington, MN
July 12-14
 


 "The SSSA annual Sotos syndrome conference is the only place you can sit across the table or in a meeting room side-by-side with someone that has the same joys, heartache, 

and emotional feelings. 

The greatness of that moment, when one can relate with other families, is beyond measure."

 

 It's time to start making your travel plans to atend the conference in Bloomington, Minnesota 
July 12-14, 2013 

 

Conference registration 
will be open soon
 but it's a good idea to 
book your hotel room now.  

  

Click here for Hilton 

Minneapolis/St. Paul Airport

-Mall of America 

Hotel information.

 

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



 

 Australia 
to the States:
destination
SSSA

by Melissa Patterson
 

 


Our beautiful boy Jack was born on the 19th of November 2007. My pregnancy was considered 'normal' and there was not any reason to think we would have any problems with our son. From the moment he was born we could see that he was big. Huge feet and hands but nobody really had a reason other than he was big. As time went on we could tell that he was having problems...

 

Click here to read more....

   

Jack Patterson
Trophy was earned for soccer skills.
Way to go Jack!


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.

 


 

 

 

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!!

 

 

 

From the President

Monica Jacobs


BBBBrrrrr..........Kansas City is experiencing a full blown blizzard right now and no matter where you live, it is more than likely "winter" and colder temperatures. However, things were HEATING UP at the SSSA Board of Directors winter board meeting February 16th!! Some members arrived in Kansas City Friday evening for the early Saturday morning meeting while others utilized the conference line to call in Saturday morning.     

Click here to read the rest of Monica's letter....

winter board meeting1  Monica Jacobs, President and 

Kristin Gilbertson, Secretary

  winter board meeting 2

Carrie Leddy 
 at the Winter Board Meeting

 Owen 
 

Hello. 

I know all of you 

know who I am. 

My name is Owen Eigenberg. 
I am loving the culinary 
arts career. 
I am cooking up all kinds of
 neat things.

 

vancouver 2  

Grayce Hilton and Owen

in Vancouver

 

from the editor:

Thanks Owen for letting

us know about

your budding culinary career

for the

the SSSA Notes. 

 

CALLING ALL TEENS and Young Adults!

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 

newsletter.

 

 


Click here to view proxy

 

I am wearing a pair of shoes. 

They aren't pretty shoes... uncomfortable shoes. Each day I wear them. 

Each day I wish they'd feel more comfortable. Some days my shoes hurt so badly that I do not think I can take another step. 

Yet, I continue to wear them and continue my journey....

get funny looks wearing these shoes. 

I can tell in others eyes that they are glad these are my shoes and not theirs. 

They never talk about my shoes.... 

To learn how painful my shoes are might make them uncomfortable. 

To truly understand these shoes one must walk in them.

 But, once you put them on, you can never take them off.


...I now realize that I am not the only one who wears these shoes. 

There are many pairs in this world. 

Some women ache daily as they try and walk in them. 

Some have learned how to walk in them so they don't hurt quite as much. 

Some have worn the shoes so long that days will go by before they think about how much they hurt. 

No Mom deserves to wear these shoes. 

Yet, because of these shoes I am a stronger woman. 

These shoes have given me the strength to face anything. 

They have made me who I am. I

 am a Mom who has a child(ren) with special needs. I will forever walk in these shoes. 

 

~ Unknown

 

 

william skis
William Hefner
 getting ready to ski with 
Adaptive Sports Center in
Crested Butte, CO
  william skis1
"Thumbs up"
william and stephanie
with Stephanie his ski instructor
 
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 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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