News from Sotos Syndrome Support Association

SSSA NOTES

August 2012

In This Issue

SSSA 2012 Conference Highlights

First Time Attendee Conference Thoughts

From the President

Postcard from Camp Squamish

Owen Eigenberg

SSSA Conference

Vancouver , Canada

July 20-22, 2012

highlights

51 families headed to Vancouver for the 2012 conference.

Click here to read about the conference and activities.......

Charlotte Diamond

and conference attendees performing at

Friday Night's Dinner

On Vancouver

by Linda Stout

Reese and I attended the 2012 Sotos Syndrome conference in Vancouver Canada. I must say attending the conference has to have been one of the greatest decisions I've ever made.

Click here to read more....

Linda and Reese Stout

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GET INVOLVED!!

Send your comments, book reviews or a story about your experience to us for inclusion in the SSSA Notes:

newsletter@sotossyndrome.org

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Newsletter Submissions

PO Box 4626

Wheaton, IL

60189

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

Also, Don't forget to take a Halloween pic to send in for the November issue of SSSA Notes.

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.

A Handbook for Families

(Third Edition)

$15 plus shipping

English Spanish

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

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From the President

Monica Jacobs

SSSA Family-

I hope everyone has had a great summer!

For my family, the highlight of the summer was the Monica

same event it has been for the last seven years.........

the sotos conference.

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

Evelyn Hefner and Megan Boers

Click here to view proxy

Postcard from 

Camp Squamish

by Evelyn Hefner

Saturday morning we loaded the bus and headed towards Camp Squamish...

click here to read about her stay at the

2012 SSSA Vancouver Conference

Easter Seals camp

vancouver 6

Grayce Hilton, Evelyn Hefner and Lynn Hilton

waiting to board the bus to

Camp Squamish

waiting for bus

Another Camper ready to load the bus

Owen

Hi my name is Owen Eigenberg

I have gotten my learners permit.

And had a great time making new friends at the Sotos conference in Canada.

I didn't know I would be talked about. As my mother said " he was the j.b (Justin Bieber) of the conference."

Most of my friends call me "ozone".

owen and grayce zach

Owen, Grayce Hilton and Zach Fernandez in Vancouver

from the editor:

Thanks Owen for sending in that paragraph for the SSSA notes.

CALLING ALL TEENS!

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Anabelle Guiger performing with

Charlotte Diamond at the

SSSA Vancouver Conference 2012

Brody O'Brien at the Friday Night dinner SSSA Vancouver Conference 2012

click here

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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