RESOURCES
All Resources
March is Trisomy Awareness Month
It's March and in SOFT's world that means Trisomy Awareness Month! Every March our SOFT community celebrates Trisomy Awareness Month. This is a time when we share awareness and education of Trisomy...
Video – Cardiac Surgery in Infants with Trisomy 18 and Trisomy 13
A new day is dawning for our kids with heart issues. For years many of our families have had life saving surgeries denied simply because of their child's diagnosis. Dr. James Hammel at Children's...
SOFT Conference History
SOFT has held annual family and medical conferences in various cities since 1987. The annual conference is organized by a host chapter and conference topics have included an overview of Trisomy 18...
Workshop: Transition Points in the Trisomy Journey
Transition Points in the Trisomy Journey was a morning workshop led by Joyce Coleman, a Licensed Clinical Social Worker with over 20 years of experience in health care.
Perspectives on the Medical and Genetic Aspects of the Trisomy 18 & 13 Syndromes
Presented at the 2012 SOFT Conference, St. Louis Dr. Carey began by saying questions were welcomed. He also noted most participants were familiar with the basics of trisomy, so he would...
DNRs and Advance Planning for Kids: Everything You Need to Know
In this article, we will go through all the various acronyms, explaining the pros and cons of each type of advance planning order or form, including how each will be interpreted in a variety of settings.
Growth Charts & Surgeries
Bonnie Baty, PhD, Genetic Counselor at the University of Utah, in collaboration with SOFT, created the first, and still only, charts with growth curves for infants and children with trisomy 18 and...
The Rare Disease Connection: Interview with Dr. John Carey & Hope for Trisomy
English Language Podcast Spanish language Podcast