Giving Thanks | |
Please thank our
supporters!!
Although our organization collects
dues from our members, we could not exist the way we do without also receiving unsolicited donations from members, their employers
and friends of the SSSA.
The kindness and generosity of these individuals is appreciated by those of us who volunteer to run this organization and provide a service
for our members each year.
follow this link to see the
entire list of donors
If you are interested in making a
tax deductible donation to
our organization,
click here to use Paypal
or you can mail a check to
SSSA, P.O. Box 4626,
Wheaton, IL 60189.
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Make a tax deductible donation to the SSSA TODAY!!
To donate using PayPal,
click on one of the
dollar amounts below.
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To donate by check
Mail to:
SSSA
P.O. Box 4626
Wheaton, IL 60189
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THANK YOU!!
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Photo taken at Disney World during Star Wars Weekend last May. Jacob Jennings is seen here with two Storm Troopers. Jacob is a huge Star Wars fan and during Star Wars Weekend he got the opportunity to have his picture taken with various SW "celebrities".
"Thanks Sue for sending in this awesome pic." |
SOTOS
Research Article | |
Adults with Sotos syndrome:
Review of 21 adults
This is 7 pages of information from the American Journal of Medical Genetics received 19 September 2010;
accepted 30 May 2011.
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Meet Kellie
our newest board member | |
Hi. My name is Kellie Taylor-Penny. My adorable little boy is Daniel.
Daniel was diagnosed with Sotos five days before his first Birthday.
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SSSA celebrates 25 Years! | |
The SSSA held its' first conference
in 1988 in Dallas, TX.
There were 9 parents at the
first conference with 17 families the
following year in Arlington, TX.
Since then, conferences have moved all across the United States and Canada....
Record attending years
have been in
Niagara Falls, Canada and Williamsburg, VA...
both with approximately
75 familes in attendance.
click here to see where we have been!!
If any of you would like to host a conference or help plan a conference, please contact
support given and received
at un-official gathering
SSSA Vancouver Conference 2012
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Tell Us Your Story
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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.
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From the President
Monica Jacobs
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Happy Thanksgiving!!
I for one am very
thankful for the SSSA!
I am not sure what my family's life would be like without it!
I know it would be different.
I would not have all the wonderful friends throughout the
United States and Canada
if I had not met them at
previous conferences.
click here to read the entire letter....
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Peter, Donna and Richard Costello at SSSA annual conference July 2012 |
Donna Costello and William Hefner at SSSA annual conference July 2012 |
SSSA Conference Minneapolis 2013 | |
It's time to start making your travel plans to atend the conference in Bloomington, Minnesota
July 12-14, 2013
Conference registration will open
next spring but it's a good idea to
book your hotel room now.
See this link for instructions and make sure you request the
"Sotos Syndrome" rate.
Make it a family holiday and check out
the following websites for
tourism advice.
The hotel is practically next door
and the
.
http://www.minneapolis.org/
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Quick reads...
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All the World is His Stage
"I would give anything to be able to go back in time and tell those beleaguered parents of the leaps and bounds he would make, the milestones that eventually be conquered....."
Helping Your Child
Succeed in Sports
"Forcing a child's interest in an activity may backfire. Let your son or daughter dictate whether or not they are really interested in pursuing their sport seriously."
both articles taken from the EP magazine/www.eparent.com
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Words Hurt | |
The "R" word
HURTS
"How long has it been since you heard someone use the R-Word?
Was it at school or in a mall or restaurant? Most people would never call a person with a disability by that term, but far too many people do think it's funny to use it in conversation to describe someone who has made a mistake, or a situation that is ridiculous. "
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This is a project of the
Oklahoma Developmental
Disabilities Council (ODDC) www.okddc.ok.gov
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Order DVD or Handbook Now!
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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
by check, please visit our site.
Book/DVD Order Form
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