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SSSA Conference
Vancouver , Canada
July 20-22, 2012
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158 people in 51 families are heading to Vancouver next week for our annual conference.
It's not too late to join them!
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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
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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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| Click here to view proxy
Sotos Syndrome
Support Association
Notice of Annual Meeting
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Take notice that the annual general meeting of the members of Sotos Syndrome Support Association
will be held at the
Vancouver Coast Plaza
Hotel & Suites,
1763 Comox Street,
Vancouver, BC,
Sunday, July 22, 2012
at 9:00 a.m. local time for the following purposes:
1.To receive the financial report of theTreasurer
2.To receive the membership report
3.To elect directors
4.To transact such other business as may properly come before the meeting or any adjournment thereof
If you are interested in taking a position as a board member or officer or serving on a committee, please email president@sotossydrome.org
If you are unable to attend the meeting, you may appoint another person to cast your vote by completing, signing and returning the Proxy form.
Click here to view proxy.
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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.
______
To donate by check
Mail to:
SSSA
P.O. Box 4626
Wheaton, IL 60189
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THANK YOU!!
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From the President
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OMG!!!
Summer is half over and there are SO many activities that remain on the "to do" list before school starts in August.
In the last four weeks, I have gotten married, spent a week at a national dance convention with Megan, planned and attended an out-of-state baby shower for a family friend, worked full-time when not traveling and tried to fulfill as many of my responsibilities as President of this organization as possible!! With all of this going on, I have been feeling like I am not doing any of it justice...my new husband, my kids, my full-time job and this organization.
Yesterday, I opened up an email that a friend from work shared with me months ago. It was a link to a website. I believe the reason I didn't open it awhile back was because I needed to read it yesterday. As I read the email, I thought of all the moms that wake up every day aiming to be perfect at everything we do. We can't help it....we are "made" that way.
Then....God gives some of us a child with special needs and then we feel the pressure. We aim to hit every therapy, IEP, and Doctor appointment while still giving our child all the other fun and extra things that we think they need.
I need to keep this short and start packing for the SSSA conference in Vancouver, it is less than a month away and it needs to be PERFECT :) !!!
Until August,
Monica Jacobs
(yeah...new married name)!!
Megan at national dance finals
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NEVER GIVE UP!
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Megan is a very social, outgoing 11 yr. old who was diagnosed with classic sotos syndrome when she was one year old. She did not walk until two years old or talk until after she turned four, she didn't wear cute girly shoes when she was little because she wore orthotic braces (and her feet were too big for cute shoes :).
Despite these early challenges, Megan has always wanted to dance! She started dance class right when she turned 5 and has never looked back. Through the years she has taken ballet, jazz and tap. Last year she decided she was "too good" for a simple dance class, she wanted to compete! A high school girl offered to perform a duet with her at dance competitions. Although she didn't quite keep up, she never GAVE UP and proudly accepted a trophy almost as tall as her at the last competition in June 2011. Well....in the fall of 2012 Megan decided one dance was not enough! A dance studio had just opened in our area and the owner said she would work with Megan as a member of her competitive dance team.
That was last September.... Megan competed in three dances at several competitions, performed in six dances at the dance recital and packed her suitcase to attend the nationals in Branson, Missouri the very next day!!
Throughout this season, Megan was recognized as "Most Inspirational", "National Representative for Dance Week" and most recently at Nationals, for her solo, a judges choice award for "Smile Stamina". She has more desire, will and dedication to dance than I can ever begin to describe! Additionally, she is part of a great "circle of friends" that cheer her on and are there for her when she is disappointed.
There is no doubt she is still "different", both socially and as she dances....but she never, ever gives up!!
What's in store for this fall?
Well.....it includes adding hip-hop, lyrical and contemporary dance and pointe to her weekly practices. What does Megan do when she isn't dancing at the studio? Well, of course, she watches "Dance Moms" and "Toddlers and Tiaras" on TV!!
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