Sotos Syndrome Support Association

 

SSSA NOTES

June 2012

 

In This Issue
Top Ten Reasons to Attend the Conference
Vancouver Family Dinner Cruise
Vancouver Conference
SSSA Member's Conference Story
DVD...A Journey from Diagnosis
 
"Top 10 Reasons 
to Attend the 
SSSA Conference" 
from our Members
 
 

 

1. The..... Conference met and exceeded my expectations."

  

2. "I went to [the conference] feeling confused and worried about my son's future and now I feel confident and hopeful. I recommend anyone whose child has Sotos to come and experience a conference as soon as possible."

  

3. "The first [lecture we attended] was with Dr. Schaefer. After about thirty minutes into his presentation, I wrote a note to my wife saying 'This first thirty minutes of his presentation was worth the cost and time of the trip.'"

  

4."I definitely feel as if this trip laid the foundation for future success not only for [my child] but for our entire family."

  

5. "Attending the conference gave us a much better picture of what to expect than any book or physician."

  

6. "I felt like I was in a world that accepted my little boy."

  

7. "I have felt "out of sorts" since the birth of my daughter 7 years ago. For the first time in 7 years I felt like I was the mom of two "typical" kids."

  

8. "Experiencing the seminars and the fellowship at the conference was very helpful to me as a sister of a Sotos child. It helped me better understand my brother."

  

9."When it came time for my family to meet with Dr. Cole, we felt a sense of relief. He was the first professional that I have ever talked to that knew what Sotos syndrome was. He confirmed the diagnosis and answered questions I had wanted to have answered for so long!"

  

10. "Our son had a great time in childcare and made new friends."

"Childcare was especially helpful because we could rest assured our little one was in goods hands while we relaxed and listened to all the speakers."

 5 Girlfriends

 

 


Vancouver

 Family 
Dinner Cruise
deadline July 2



Come cruise with us! 

The SSSA is very excited to announce that 

we will be offerring a family dinner cruise 

on Saturday evening at the conference 

this summer in Vancouver!

 

 Conference attendees always tell us 

that the most rewarding part 

of coming to a conference is meeting and visiting 

with other families. This cruise will allow us 

to spend quality time together 

while enjoying a true West coast experience.  

Normally this cruise would cost $67.00 per person 
but thanks to some very generous Canadian donors, 
we are able to offer it for only $25.00 per adult 
and $20.00 per child.

Please click here 
to read the full details 

and purchase your tickets.



Deadline to purchase cruise tickets is July 2.

 

See you in Vancouver!
 
Pride of Vancouver
 

 

 

Make a tax deductible donation to the SSSA today!!!

  

To donate using Paypal, click on one of the dollar amounts below.

 

$10  $20  $50  $100 
 ______ 

To donate by check

Mail to:

SSSA

P.O. Box 4626

Wheaton, IL  60189

_______

 

THANK YOU!!

 

 

 

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

 

**********************

 


SSSA Conference 

Vancouver

July 20 - 22, 2012

 

  English Bay Beach

Reminder for anyone thinking about coming to this summer's SSSA conference in Vancouver, Canada on July 20 - 22.  

 
Monday, June 18 
is the deadline to book hotel rooms 
at the special conference rate of $169/night. After that, you can still try to book rooms but will have to pay the "normal" hotel room rates. 
 
Registration for the conference itself continues until Friday, July 13. 
 
All details are at 
 in the conference section of the website.  

 

 

You can browse the SSSA website for more information about the conference or if you have questions, please e-mail us at conference@sotossyndrome.org.

Past attendees will tell you that there's nothing better than meeting fellow Sotos families face-to-face!

SSSA Member's
Story

by Sue Jennings
 
We live in Cambridge, Ontario which is in the southwest part of the province. We've been members of the SSSA since 2005 which is when I attended my first conference along with my mom and Jacob (our Sotos kid) in San Antonio. 

 

Like many other families have found, that first conference really was an eye-opener. I'll never forget checking into the hotel late Thursday night and standing next to another family who had a child that looked like mine! It was gratifying and overwhelming to be surrounded by people who "get it"; get why a big kid is clutching his teddy bear and having a finger-biting, foot stomping tantrum, get the unexplainable anxiety and phobias, get the family stress and get the joy that comes with raising a special needs child.

 

In 2008 we had the opportunity to "pay back" all the support we received from the SSSA by being part of the planning committee for the Niagara Falls conference. I was in charge of childcare and it was a tremendous amount of work but a very rewarding experience!

 

When I'm not being "mom", I work part-time as a Special Education Teacher in an elementary school. My journey with Jacob has been a boon to my teaching career. I feel it has made me a more empathetic teacher and I can more fully appreciate the challenges my students and their families face as they navigate the sometimes murky waters of special needs education.

 

My two older boys are busy wrapping up their high school years. My oldest has begun his first year of University with the second following next year. My boys have always accepted Jacob for who he is and interact the way any siblings do. They love each other and argue with each other in equal measures. They are also his fiercest defenders. Next school year will be very odd indeed, when both Alex and Evan are away at school. I know Jacob will miss his brothers very much (although I am looking forward to it being quieter!).

 

We love to travel and often use the Sotos conference as a jumping off point to a new family vacation adventure. This summer we are excited about going to Vancouver and seeing the westernmost province of our country for the first time! I hope to meet many of you there too!

  

Sue Jennings, wife to Mike, mom to Alex, 19, Evan, 17 and Jacob (Sotos), 12

Jacob Jennings
                          Jacob Jennings

 

 

 

Photo of DVD and Handbooks
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. 

 

Buy Now           

 

                             

 

A Handbook for Families

(Third Edition) 

$15 plus shipping

 

  English     Spanish       

  Buy Now       Buy Now

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

 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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