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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.
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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Treasurer's Message
by Joanne Weick |
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 care about???
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.
The SSSA is an entirely volunteer run organization. All donated funds are used to further our mission to support, educate and inform our members, medical professionals and the general population about Sotos syndrome. Without your donations, we could not provide our internet homepage, toll-free information phone-line or bring doctors from our Advisory Board to our annual conferences.
If your employer needs our Tax ID number or documentation necessary to prove our tax exempt status, just contact us at treasurer@sotossyndrome.org or call our toll free phone line (888) 246-7772 and we will be glad to send you the supporting documentation.
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News From YOU | |
We are looking for any and all news stories about YOUR child with Sotos or a similar syndrome!!!
Let us know what you did this summer. Tell us about any major or not-so-major accomplishment that occurred recently. Send us a photo of your little one dressed up for Halloween.
We will include your story in a future edition of our SSSA NOTES which will be sent only to current members of the SSSA.
This is your way of keeping in touch with others you've met at a conference or letting a new family see what the future may hold for their newly diagnosed child or just taking the opportunity to tell the SSSA world how proud you are of your special someone.
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Our Next
Annual Conference | |
July 20 - 22, 2012
Vancouver, Canada
Every family has a common bond. You can spend years meeting people and never run into another family affected by Sotos syndrome. The SSSA Annual Conference is the only place you can sit across the table or in a meeting room side-by-side with someone that has the same joys, heartache, and emotional feelings. The greatness of that moment, when one can relate with other families, is beyond measure.
Please mark your calendar and plan to join us in 2012 in Vancouver. Registration will begin in February. For more information click here or visit our web site www.sotossyndrome.org. |
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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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