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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 by check, please visit our site.
Book/DVD Order Form |
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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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Help Wanted | |
Do you want to get involved with the SSSA?
We are looking for a volunteer to transition into the position of Conference Liaison. This person will help the conference committee to plan and organize the Annual Conference. All support is done through emails and phone calls. You do not need to be available to attend each conference because your support occurs throughout the year guiding the committee through the pre-written, step-by-step procedures to planning the event.
If you have excellent project management skills, communicate well and enjoy supporting a group of enthusiastic people planning an event, please contact us at president@sotossyndrome.org. |
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Meet Ali in Australia |
 My name is Ali and I'm 20 years of age. I live in Victoria, Australia. I have just recently joined the SSSA and I hope to meet some people that have Sotos syndrome both in Australia and overseas. I live with my mum, sister (24) and brother (18) and a dog named Clifford. To read more about Ali....click here... |
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Find Support. Give Support.
Learn Something. Teach Something.
GET INVOLVED!!
Send your comments, book reviews, or articles 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
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From the President |
 Happy "March Madness" to everyone! It is a crazy time of year...where even those that don't watch college basketball find themselves in a bracket pool....picking teams based on name, mascot, location, seed, who knows??? And then there are upsets and injuries and Cinderella teams, no way to know what to expect. Similar to raising a child with special needs - not knowing anything when we start out, learning along the way and not knowing what to expect next! The big difference is our "March Madness" occurs 365 days of the year instead of three weekends of the year. The annual conference is my "therapy"-my time to talk with other parents of children diagnosed with Sotos, to watch my daughter, Megan, interact with other kids just like her, to learn additional ways to help her grow and learn and to relax with other families living similar lives to myself! There is a lot of information on the conference in this month's notes, on the website and in your mailbox! Start planning to attend!
In other news...the SSSA winter board meeting was held in Kansas City in February. Three of our board members and two officers attended in person while the remaining attended via conference call. There were lots of items discussed during this 4 ½ hour meeting, including a wrap-up of last year's conference, plans for the 2012 conference, perspective cities for the 2013 conference, the website, the monthly notes sent via constant contact and many other items. We talk non-stop with NO breaks! Of course when the meeting was over, those of us attending in person gathered for lunch at "Cheeseburger in Paradise" (thank you to the management for some delicious free appetizers). Later, some board members continued to work on items while I was "forced" to give a tour of the outdoor outlet mall!!
SSSA Boardmembers and Officers:
Joanne, Monica, Donna, Ellyn and Kristin
Our next board meeting will be held prior to the start of the annual conference in July. There will be some board members retiring and I will be "searching out" interested members at the Vancouver conference to fill these positions. If you would like to know more about the board and its function, please email me directly at president@sotossyndrome.org.
Blessings to all......Monica |
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Last Year's Conference |
 Ann Lombardo and her family attended the SSSA conference for the very first time last year in Williamsburg, Virginia. She kindly took the time to write us about her experience.
We had such a great time at last year's conference. Thank you so much. It was very helpful for the whole family.
We learned so much in a great environment about Sotos Syndrome. Meeting so many different families and sharing stories was something you could never get from a book or computer. We were lucky enough to meet a family only thirty minutes from our house who we have become good friends with. The sessions were very helpful and being able to ask questions was a great assist.
The conference was very organized, lots of fun, and I would definitely recommend it to any Sotos family - especially if your child's diagnosis is new to you. No better way to learn so quickly.
Thanks to all who put the conference on.
Anne Lombardo |
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Meet the Board Member |
 James Gardner is one of the new members of the board and the first director to be a sibling of an individual with Sotos syndrome. His younger sister, Brook, was diagnosed at the age of 3 1/2.
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SSSA Conference 2012
Vancouver, Canada
July 20 - 22, 2012 |
Photo courtesy of Vancouver Tourism
Click here to read more about the conference and follow links to registration, the conference hotel and travel suggestions... |
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