About SOFT Australia
S.O.F.T. Australia is a volunteer based, organisation that was formed in 1996. Comprised of a network of families, professionals and friends we are dedicated to the support and education of parents, family, friends and health professionals regarding the many complex issues and decisions surrounding the diagnosis and care of children who are diagnosed with a Trisomy and other related chromosomal disorders.
We make no judgement about the decisions individuals make, rather we aim to support families and individuals in whatever way we can through a network of families who share similar experiences and professionals who also wish to assist.
S.O.F.T. Australia actively promotes research into all aspects of trisomy, including the causes of trisomy, prenatal diagnosis, caring for a child with a trisomy condition, and the emotional well being of the family unit and extended family.
We are dedicated to making information freely available to families, in a timely manner and without the burden of cost during a very difficult time.
S.O.F.T. Australia aims to raise community awareness and to dispel the myths and inaccurate information which frequently surrounds these relatively rare conditions. A priority is always given to ensuring that information is accurate and unbiased.
As a result S.O.F.T. Australia is actively engaged in the education of individuals and the medical community.
We’re here to help
S.O.F.T. Australia supports no particular political or religious beliefs, nor do we advocate any particular course of action, treatment or therapy. Rather we aim to support families within their own beliefs and to help individuals to make their own informed decisions.
SOFT Worldwide
SOFT USA
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 UK
SOFT UK was founded in 1990 by two mothers, Christine Rose and Jenny Robbins. They had discovered first-hand that there was a lack of support and information for families affected by Trisomy 13 (Patau’s syndrome), Trisomy 18 (Edwards’ syndrome) and related disorders.
