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SSSA Conference
EARLY-BIRD
DEADLINE
April 30
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Ther are only a few days left
to get the discounted, early bird
registration fee for this summer's
Sotos Syndrom Support Association
conference.
The ear;y-bird fee is $US 125.00
per person until April 30.
Full price fee is $US140.00 per person
as of May 1.
Please click here for
registration information.
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Mom's great ideas found on the E-list | |
Recently on the Sotosyndrome@yahoogroups.com e-list, conversation turned to easing our children's battle with large bowel movements
and constipation.
Heather from California,
mother of 2½ year old Luc, posted her suggestion for a high fiber diet that has brought her family success.
*Remember, before trying
anything new, check with your doctor.
Click here to read
Heather and Luc's story...
Heather and Luc
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United Way
&
SSSA
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*Do you already give to
United Way???*
If you donate to *United Way*
through your company,
why not direct those
funds to a charity that you
are involved with???
The SSSA is a 501(c) (3)
tax exempt organization
through the IRS.
In the fall, when your Human
Resources Department hosts
a United Way campaign,
ask them to direct the
funds to the
Sotos Syndrome Support
Association,
P.O. Box 4626,
Wheaton, IL
60189.
If your employer needs
our Tax ID number or
documentation necessary
to prove our tax exempt status,
just contact the
SSSA at
or
or
call our toll free phone line
(888) 246-7772
and we will be glad to send
you the supporting
documentation.
Joanne Weick
SSSA Treasurer
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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.
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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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From the
President's husband....
Dad's Day 2013
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My name is John Jacobs. This July will be my fourth conference as a dad who has a child who has Sotos syndrome.
If you not yet registered for the conference, I hope the experiences I share will encourage you to do so.
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SSSA Conference
Sneak peek
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Here are a few teasers on who will be presenting at our annual conference.
Click here to check out part
of the line-up.
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2013
SSSA Conference
Bloomington, MN
July 12-14
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Start making your travel plans
to atend the conference in
Bloomington, Minnesota
July 12-14, 2013
Conference
registration
is open !
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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Kellie Taylor Penny and her son Daniel
participating in the "Memory Mile Run"
in Raleigh to honor the victims of the
Boston Bombings.
"Daniel tried to run most of the mile
but his hips
started to hurt too bad
so we walked portions of it."
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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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 William Hefner with his cousin's on his First Communion. |
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John's daughter Megan and
