SSSA Notes
February 2015
Welcome to the NEW FORMAT of the 
Sotos Syndrome Support Association Newsletter
Hello my friends,
When I became President last July I was handed a box that had some documents in it about the early days of the SSSA. It was fascinating to me to read it. I thought I would share some of what I learned with all of you. It's time for a History lesson but don't worry there won't be a test. Lol

 

The SSSA was founded in 1988. The first President was a woman by the name of Gwyn Rogers. Ironically enough she had a son named Daniel. It seems that as early at 1984 she was writing letters to Dr. Juan Sotos (the Dr who discovered Sotos) and asking him if there was an organization or support group for children with SSSA. She was told that there wasn't. I suspect that's where the idea to start the SSSA began.....

 



Brody

 
 Start Planning Your 2015
 Annual Conference Trip NOW!!

If you are thinking about attending the 2015 SSSA Annual Conference on July 10 - 12 in Disney World in Florida, there are many special services offered by Disney just to accommodate people with disabilities. 

 

Conference is just as important.
 

When planning your trip please keep in mind that the conference runs from early afternoon on Friday, July 10 until early afternoon on Sunday, July 12.  With the exception of Saturday evening, those 48 hours are action packed with Sotos related information, networking and support that you won't want to miss.


 

There will, of course, be Disney related activities scheduled during the conference childcare but, if you want to visit the Disney Parks with your family, please schedule some extra vacation days either before or after the conference weekend.
See you at the conference!


Rachel Riefler and Owen Eigenberg celebrating an early Christmas in Chattanooga, TN.


Elise (6), Jalen (9), Elena (12), and Jason (18)
In This Issue
Disneyworld
links




2014 SSSA
Conference
SSSA 
Dues
Click here to pay SSSA yearly dues


SSSA 
Video Corner
Love Your Child
"Love Your Child"
Dr,Trevor Cole, Rebecca Anderson and Dr. Brad Schaefer speak to the importance of loving your child who has a diagnosis of Sotos syndrome.

-Excerpt from the DVD, 
A Journey from Diagnosis through Life.

DVD:
A Journey from Diagnosis through Life
created by the SSSA
$5 + shipping
Large DVD Handbooks PHoto

 Order info

Donate

to the SSSA

Make a tax deductible donation to the SSSA TODAY!!
To donate by check:

Mail to:

SSSA

P.O. Box 4626

Wheaton, IL  60189

 

 Click to DONATE

THANK YOU
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 Member Story
 New members of SSSA

Hello, we are here ready to learn and hope to educate more people, along with our friends and family, about SOTOS syndrome. Our daughter is 9 months old and was diagnosed about three months ago. It all started when she was born with extra skin on the back of her neck; she was tested for Turners Syndrome twice and our doctors wanted to keep going, but we denied. Then at her four month check up she was not holding her head at all on her own so we were sent to Children's Mercy for further testing of muscles. From there we given another appointment, which turned out pretty scary because we found out she had a heart rate of 210. She has a heart condition called PJRT, but we are praying that she grows out of it soon. :) At the hospital they decided to test for SOTOS due to some of her features and it came back "positive." It all makes sense now as we have learned that SOTOS babies have delayed development, low tone muscles, and rapid growth. We are reaching our milestones slowly but surely with OT every week. She is such a happy baby who loves to roll around and chew on everything! We would love to connect with other families and will take any advice you have for new families with an infant with SOTOS. 

~George Archer

whitneynacole@hotmail.com 

 

 
 SSSA Support 
 = Dues

It is a new year and it is time to ask every member to pay dues to the Sotos Syndrome Support Association.  
Being a member of the SSSA is not like being a member of the auto club where your dues help pay for service for your car when it breaks down. The only commodity the SSSA offers is support and information.

The way we support and inform our members is through our web page, toll-free phone line, SSSA Notes, our informational DVD and Handbook for Families and our Annual Conference. 

It is at our conferences over the past 20 years that geneticists, Dr. Brad Schaefer and Dr. Trevor Cole and  genetic counselor, Becky Anderson have had the opportunity to see dozens of children with Sotos syndrome. They study the syndrome, advise us and report the latest news in the medical world.  

We would be lost without them!

So, even though we are an organization run totally by volunteers, (mostly parents of individuals diagnosed with Sotos or similar syndromes), we still have to pay for these tools and services that we offer to our members.  

That's where your dues come in! 

Please help us continue to help you and others - by paying your annual dues of $35 dollars now.

If you live outside of the United States and use PayPal - choose to pay in U.S. dollars and your funds will automatically be converted.

 

If you wish to pay by check - remember we take only U.S. funds.  

 

Thank You!

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Wheaton, IL 60189
Please send stories, photos and comments to:

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