Welcome
Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) is a non-profit volunteer organization offering support for parents who have had or are expecting a child with a chromosome disorder (especially Trisomy 18 and Trisomy 13), and education to families and professionals interested in the care of these children.
New Family Information Package
This free package contains sample newsletters, a Trisomy 18 and Trisomy 13 Fact sheet, 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 6,000 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). Infants born with Trisomy 18 usually have small size at birth. There is a recognizable pattern of physical features that often allow 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…
2012 Conference
Online registration for the conference is now open. Visit our conference page for details.
SOFT Stroll for Hope Fundraiser
This is SOFT’s annual fundraising event and takes place during our annual conference. Both attendees and non-attendees can help raise money. This is an optional event. You can make your pledge page by logging onto https://www.firstgiving.com/softstrollforhope/stlouis and get started. Come dressed in your favorite team attire if you are attending the conference. The Cooks will be Jonathan’s Fans, all decked out in rainbow, of course. The Cook Family will be sponsoring this important event in Memory of Jonathan. There will be prizes for the best dressed family, most pledges raised, best decorated wheelchair and stroller awarded by the Cook Family. All teams will then walk around The Ambassador Ballroom in the Frontenac St. Louis Hilton with many cheering us on. You may even see some newspaper and TV crews there too.
For questions, please email Cindy at newbeg08@aol.com or Sheryl Crosier at smcrosier@sbcglobal.net.
Read family stories or create your own family page on SOFT’s Families Page.
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