SOFT’s Mission, History and Founding
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.
History and Founding – SOFT Beginnings
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. Dr. Carey, medical advisor for SOFT, suggested that SOFT include both trisomy 18 and trisomy 13 families as the life span and issues of care are similar in both disorders. SOFT members also include many families having children with related disorders. Kris has written SOFT Beginnings which explains how SOFT was created and became the organization it is today. Kris also continues to inspire families and professionals with her stories about Kari. Read Gifts of the Heart [Holladay K., the SOFT Times, 2012].
Hearing that their baby has a diagnosis of any chromosome condition is so difficult for parents. In trisomy 18 and 13, statistics burden families with the anxiety of probable loss, the uncertainty of a tomorrow for those who do survive, and the sad news of mental and physical disability. Accurate and current information about these disorders and the survivors (newborn and long-term) is important for decision making, but unfortunately is not always made available to these parents. With over three decades of helping families, SOFT is uniquely able to educate parents and professionals about long-term survivors and the issues of care and coping.
SOFT holds annual conferences in different cities around the country. The 2012 conference was in St. Louis, MO and the 2013 conference will be in Providence, RI. A list of prior conferences, and the cities in which they were held, can be found here.