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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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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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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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President's Message
by Monica Boers |
SPRING....my favorite time of year! Lawns are green, flowers are blooming, kids are excited because school is almost out, and THE CONFERENCE IS JUST AROUND THE CORNER!!
I look so forward to seeing my extended "Sotos" family each year. It brings so much joy as I see Megan now reconnecting with old friends, meeting new friends and becoming the "social greeter" at the hotel like she did last year in Arlington. It is something she talks about all year long and then keeps talking about it and keeps talking about it (after all we are talking about Sotos kids, right?).
This will be our sixth consecutive year of attending. I'm thankful that I have been able to do this. It became a priority to me after attending the first time and seeing other Sotos kids and hearing the speakers, but mostly because I really wanted to continue on the journey with other families. There is no better way to do that than the conference weekend. I've attended Sotos 101, What's new in Sotos, potty training, behaviors, genetics, planning for the future, OT, PT, speech and so on. Too many to list but I have every note I have taken from these conference topics. My favorite was in Niagara Falls and a lady spoke about "Circle of Friends." She had a special needs daughter and spoke on the importance of finding the right people/friends for her daughter so that as her daughter grew older, and it wasn't cool to be with mom, there were other caring people in her circle of friends that would watch out for her. I've talked about that topic for so long and with so many people. It left a lasting impression on me.
The welcome dinner, silent auction and entertainment on Friday night is the BEST! I love seeing friends from previous conferences, sharing information with new families, watching other kids get out of control because then I know I am not alone, and getting into bidding wars on silent auction items. Two years ago I bid on a "pet bag full of goodies." It actually took our dog two years to finish off all of those delicious dog treats.....best money I could have spent...for both my dog and the SSSA since proceeds benefit the organization.
Sunday....breakfast together when Barry provides a great slide presentation of the weekend and we "network" one last time. This is followed by the general meeting and the "Q & A" with the doctors. This is the time when we get to ask all of our questions.....any topics, any age of child, our experts give us the best answers they can and we "soak it up." OK, so I know a lot of you probably don't want to attend a general meeting, BUT.....you are the organization and we need YOU and YOUR IDEAS to keep growing this organization. Can all of you attending give me, as President, just one hour of your time that morning and attend the general meeting?
Hmmm....Williamsburg, VA.....have you SEEN how much there is to do there and in the surrounding areas? The biggest decision is which direction to head either before or after the conference!! For us, it is DC as we will probably not be back to that area. Another great thing about attending is traveling to places you would otherwise never have gone! I'm going to start packing....... |
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In Appreciation | |
The SSSA gives thanks to the following for their contributions and continued support
SSSA Members who sent a donation along with their dues
Sanchez - Azofeifa
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Bank of America United Way - member Monica Boers
United Way of Wyoming Valley - member Valeri Calkins
United Way of the Midlands - members
Vincent Miller and Rebecca Anderson
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For printing our Newsletter
SSSA Members Kevin and Toni Williams
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Donations made through MissionFish on EBay
SSSA Member and 2011 Conference Planner Ken Rupert
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Williamsburg 2011 |
From the Conference Planning Team
Well, spring has sprung in Williamsburg and the conference team has been hard at work securing a host of colonial adventures for July. Unfortunately, Thomas Jefferson and Thomas Paine will not be available to welcome the guests upon arrival. However, we do have good ole southern entertainment and great southern hospitality.
Our unofficial theme this year is "Bringing families together." This theme developed during our last planning session and we thought it was a fitting theme. This year we are excited to offer several different breakout sessions that we hope you will find both interesting and profitable.
Friday night promises to be a fun-filled night with plenty of entertainment for the entire family and opportunities to win some wonderful items at the silent auction.
Our breakout sessions on Saturday include the popular topics taught by Dr. Schaefer, Dr. Cole, Dr. Kuhn, and Rebecca Anderson. We also have some exciting topics planned such as PROMT (a speech pathology program), Planning for the Future (wills, trusts, and estates), Project T.E.A.M. (a financial planning session to answer the question "I have a trust, now what?"), and one session just for the men on the four essentials of a dynamic team facilitated by Dr. Williams, who has worked with many notable persons both in government and professional sports.
Saturday for the kids will be a time to explore history as the older children travel to the Shirley Plantation, the oldest plantation in Virginia (1613) and the oldest family-owned business in North America (1638). After that they will travel back to Colonial Williamsburg for a guided tour of the city. Then on Saturday night families can participate in the Tavern Dinner and Hauntings Tour of Colonial Williamsburg. This adventure is sure to convince even the greatest skeptic.
As a team, we are very excited about offering our membership a conference which will be talked about for years to come. We hope you will choose to participate in this year's conference in Williamsburg Virginia -- where history comes alive!
Anita Wyrick, Kellie Siers, & Ken Rupert
The 2011 Conference planning team
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Conference Testimonial
A Child's Perspective |
[Edited version] "Sometimes when I look around, I see people doing really bad things like not liking someone who is a little different from the rest of the group, like me, because I have Sotos syndrome. But when I went to a conference, people like me can be themselves and not feel like an outcast. Now I realize that I can make a difference. Even if no one else will make a difference, I will make one for all people like me or with other disabilities or medical ones to have a better future and also to have a place in this world."
[Original version] "Sometimes when I look around I see people doing really bad thing like not leting someone who is a little diffent from the rest of the grop like me because I have sytewe simdum but when i went to a confrents were people like me can be themself and not feel like a owtcast. now I relise that I can make a differs even if noone else will make a differnts in this world I will make for all people like with other disobits or mitels ones to have a better fucher and also to have a place in this werld."
by Rachel Harding, age 15 |
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Meet the New Members |
Jenni and Chris Druckrey, Spencer, IN
Jenni and Chris' daughter Mackenzie was born in 2001. She was diagnosed at 1 year by a Geneticist. She has had an ASD repair, suffers from low tone, developmental delays, flat feet and dental problems. She has phobias, anxiety and a short temper. She is delayed in all subjects and has a problem with problem solving math.
Melissa and James Seymour, Kelseyville, CA
Melissa and James' daughter Tisiana was born in 2008. She was diagnosed at 1 ½ by the genetics department at UCSF. She has constipation and wears heel inserts to correct foot positioning. She becomes frustrated easily and throws tantrums. Sometimes she hits herself and others. She sometimes pulls her hair. She has some gross motor problems and is delayed in expressive language.
Any members out there that live nearby or have similar issues, please contact Jenni and Melissa. .
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