Support Organization for Trisomy 18, 13 and Related Disorders

27th Annual SOFT International Conference

Providence, RI

July 18-July 21, 2013

More Information


Submit Your Photos for the Annual
Kari Deann Holladay Video

Deadline: May 15


Balloon Release Request Form
for Non-Attendees

Joey Watson Fund Application 
deadline May 30


Welcome

New Family Information Package
This free package contains Trisomy 18 and Trisomy 13 Fact sheets, sample newsletters, a conference brochure and registration form, a book order form, and a SOFT New Member Registration form.  Request a New Family Information Package

Trisomy 18 Facts
Trisomy 18 syndrome is a disorder of human chromosomes which occurs in approximately 1 in 7,000 live born infants. Trisomy 18 is due to the presence of an extra #18 chromosome. Over 90% of infants with Trisomy 18 syndrome will have a full trisomy while the remainder will have a trisomy due to a rearrangement called a translocation or have mosaicism (two different cell lines).  There is a recognizable pattern of physical features that often allows the health professional to make the diagnosis of the syndrome.   …. read more …

Trisomy 13 Facts
Trisomy 13 syndrome is a disorder of human chromosomes which occurs in approximately 1 in 10,000 live born infants. Trisomy 13 is due to the presence of an extra #13 chromosome. Approximately 80% of infants with Trisomy 13 syndrome will have a full trisomy while the remainder will have a trisomy due to a rearrangement called a translocation or have mosaicism (two different cell lines).  Infants born with Trisomy 13 have a recognizable pattern of physical features that often allows the health professional to make the diagnosis of the syndrome. … read more …

Related Disorder Facts
In addition to Trisomy 18 and 13, many SOFT families have children with other chromosomal disorders. There are many different disorders and perhaps the best explanation is found in the “related disorders” presentation by Dr. Stephen Braddock, Professor of Clinical Genetics, which he gave at the 2009 SOFT Conference…read more…    In addition, read Dr. John Carey’s presentation at the 2012 SOFT conference by clicking here.

Under the “Resources” tab, visit “SOFT Stories” to see recent additions, such as a TV video about Lilliana.

Click here to read about Sheryl Crosier’s new e-book “I Am Not a Syndrome – My Name is Simon.”   A print version will soon be available.

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Recently updated pages

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Donate to SOFT

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Trisomy 13
$10.95
Trisomy 13 - A Handbook for Families
by Stenson et al 1992 (copyright 1999)
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Trisomy 18
$10.95
Trisomy 18 - A Handbook for Families
By Stenson et al 1992 (copyright 1999)
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Trisomy 18
$14.95
Care of the Infant and Child with Trisomy 18 or Trisomy 13
By Ann M. Barnes, R.N. and John C. Carey, M.D. 2008
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Trisomy 18
$10.00
Care of the Infant and Child with Trisomy 18 or Trisomy 13 (E-Book)
By Ann M. Barnes, R.N. and John C. Carey, M.D. 2011
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Books may be purchased
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Cheques should be
mailed to:

SOFT c/o Barb Van Herreweghe
2982 South Union St
Rochester, NY 14624