Trisomy 18, Trisomy 13 - Information for the Media
SOFT began with Kari Deanne Holladay (1977-1988) who was born with trisomy 18 and survived longer than predicted. Kari’s mother, Kris Holladay, and Dr. John C. Carey (Professor of Pediatrics/Medical Genetics, University of Utah) co-founded SOFT in 1980. SOFT, a registered 501(c)(3) corporation, has been helping families who have children with a trisomy condition for over thirty years. Read more about SOFT’s Mission, History and Founding
SOFT’s Mission: SOFT is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18, 13 and other related chromosomal disorders. Support can be provided during prenatal diagnosis, the child’s life and after the child’s passing. SOFT is committed to respect a family’s personal decision and to the notion of parent-professional relationships.
Read, print or download a SOFT Brochure here.
SOFT maintains relations with sister organizations in England, Ireland, Italy, Australia, Norway, Romania, Germany and other countries.
What’s New? Read about Trisomy News, recent Family Stories or website changes.
SOFT holds an annual conference for families and medical professionals in a different city each summer. Conference Information is available here.
Click on your choice below for specific information about trisomies:
Facts about Trisomy 18
Facts about Trisomy 13
Facts about Related Chromosome Disorders
Common Problems of Babies with Trisomy 18 or 13
Publications are available In addition to the many papers and articles available above, the following inexpensive books can be ordered at the bottom of the homepage:
Care of the Infant and Child with Trisomy 18 or 13 (paperback or e-book)
Trisomy 18 – A Handbook for Families (paperback)
Trisomy 13 – A Handbook for Families (paperback)
Softly Written, Softly Spoken (a book of SOFT poetry)
For more information, contact us directly.