BLOGS
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 emphasize new information. The result was he completed about 10% of...
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 13. Children’s standardized growth charts are separate for boys and...
The Rare Disease Connection: Interview with Dr. John Carey & Hope for Trisomy
English Language Podcast Spanish language Podcast
The Care Book (English, Spanish, Portuguese)
Care of the Infant and Child with Trisomy 18 or Trisomy 13 was written for parents who are expecting, living with or remembering a child affected with these disorders. The greater portion of text covers problems and management of care of the live born infant and...
April S – Trisomy 18
April's Story "We love her already and will not stop trying to find someone, some facility, who will believe with us!!!" April S, Trisomy 18 and CDH, 02/25/2019, Live 7 weeks, Orrtanna, PA So yay!! We were so excited!!! We're pregnant with baby 11!!!! Going in for an...
2018 ACMG Conference
SOFT was represented at the 2018 ACMG (American College of Medical Genetics) Conference held April 10- 14, 2018 in Charlotte, NC. SOFT Attendee: Dr John C Carey, Medical Geneticist and Pediatrician, Primary Children’s, SLC, UT - SOFT Medical Advisor SOFT member...
Lives Worth Living
Fallible Truths: Presentation made by Dr. McCaffrey View & Download this presentation. Fallible TruthsDownload
Diana Victoria Rodriguez
Diana Victoria’s Story “These babies are very special, and we are very special for having them.” Diana Victoria Rodriguez, 07/21/2007 to 08/07/2007, Trisomy 13, Plantation, FL Hello, my name is Nora-Lee Rodriguez, my husband Nicolas and I are the proud parents of...