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2013
SSSA Conference
Bloomington, MN
July 12-14
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Register now
for the
2013 SSSA
Conference
Click here for Hilton
Minneapolis/St. Paul Airport
-Mall of America
Hotel information.
*Make sure you
request the
"Sotos syndrome" rate.
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"I was so
proud of him."
by Kellie
Rotten Rottie Mama
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My Mom and I surprised Daniel with a trip to the mountains in NC. We brought along one of my dogs and my Mom's Puppy. The place we are staying at has a pond for the dogs to swim in and a paddle boat. Daniel who is afraid of boats asked us to take him in the paddle boat. We quickly decided to jump on it and got him in the boat.
He loved it. My retriever who is afraid to swim (yeah, I know somebody forgot to tell him that he's a water dog) actually jumped in the water and swam to us as well. I pulled him in the boat and Daniel just couldn't stop laughing that Louie jumped in.
Then today it was off to Chimney Rock Mountain. Daniel who is afraid of heights and has those knee and hip problems actually walked up 400 steps to see Chimney Rock. He was terrified and had to have me help him quite a bit but he did it. I was so proud of him.
He couldn't go the rest of the way up the mountain and neither could my Mom and my dog Louie so Shayna (Puppy) and I traveled up the mountain by ourselves. We made it to the highest elevation of 2480 ft. Beautiful view.
I've attached the pictures of Daniel going up the mountain.
 Daniel posing for a pic
going up the mountain
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First, Do No Harm
by Kathy Snow
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"First, do no harm," is a sentiment we're familiar with. Contrary to popular belief, it's not part of the Hippocratic Oath (the long-standing creed of physicians, named after Hippocrates, the "first physician"). But according to several Internet sources, "...to do good or to do no harm" is included in Hippocrates' book, Epidemics, and it has also been attributed to Galen, another physician from the Ancient Greek era. Regardless of the source, it's a precious concept that has great value and relevance to disability issues.
On a regular basis, we--parents, teachers, health care workers, service providers, and others--work diligently to help children and/or adults with disabilities. But in the process, is it possible we could also be causing harm?
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GOLFERS!
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Email John Jacobs
jjjjacobs79@yahoo.com
if you are interested in golfing
while in Minneapolis
for the conference.
John has only heard
from one "Dad".
"Are there more attending
the conference
who would like
to golf?!?"
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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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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
_______
THANK YOU!!
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THANK YOU
to all those who have sent in stories, article ideas
and especially
PHOTOS.
Keep Sending them in!
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From the
President
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Monica and her daughter Megan
in Vancouver
Happy "End of School Year"!!
For most of us, school is winding down and summer will soon begin. I've always had mixed emotions about it as I look forward to a break from emptying backpacks, signing agendas and emailing teachers but it is also more difficult since we are not very structured and all of us either will learn or have learned how important that is for our kids who have Sotos (probably kids in general, too). So....I hope for a great summer for you and your families and ask that you send some of those well wishes my direction as well.
I have to tell you....I am SOOOOOO excited for the conference. I have taken a peek at the registration and it is going to be another well attended conference...Megan asks me every night if "so and so" are coming.....so parents.......if your child knows Megan....you'd better get registered so that I don't have to keep answering that question!!
read more
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He Showed Us!
Mom's story
about her son
Dan
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Hi Again!
I helped create the SSSA nearly 32 years ago. It is SO delightful to see the number of people who are involved with this vital support group now.
A big "Thank you" to those of you
who are carrying on the torch!
Our youngest son, DAN ROGERS, was diagnosed with Sotos in 1980 at the age of 9 months. I won't repeat his entire story, but he's "exceeded expectations" in all areas, thanks to wonderful therapists, counselors, & his own persistence! *
click here to read about
Dan's persistance...
Dan with 4 of his 5 siblings- he's the youngest--but tallest  Dan with his parents at his graduation
*latest update: "Dan's been working 3 wks now--
and loves his job! They're also happy with the work he's doing. It was challenging finding the required "oil-resistant shoes" in a 16-wide shoe! We had to order them online."
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"help wanted" list:
**Serve on the Board of Directors (elected for two 3-year terms) nomination form
**Officers -
President-Elect or
1st Vice-President
**Conference Coordinator -
Coordinates the planning of the conference with other
volunteers who share
various roles in
"making it happen".
If you are interested or have questions email Monica Jacobs at
president@sotossyndrome.org
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SSSA Conference
Sneak peek
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Here are the bios
for two of the
speakers who will present
at the SSSA annual conference.
Click here to check out part
of the line-up.
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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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