BLOGS
Video – Advances in the Care of Newborns & Infants with Trisomy 18 and 13
From the 2020 SOFT Virtual ConferenceSession 2 of the Professionals PanelDr. Glenn Green & Dr. Shaji Menon discuss Advances in the Care of Newborns & Infants with Trisomy 18 and 13 Recorded on July 15, 2020. https://www.youtube.com/watch?v=ygny9sU2j-A About...
Video – 2020 SOFT Virtual Conference – Welcome to Conference
From the SOFT 2020 Virtual Conference: Welcome to Conference message from SOFT founders Kris Holladay and Dr. John C. Carey and from SOFT President Barb Vanherreweghe. https://youtu.be/TbmUNYKFnsc
Video – Perspectives on the Care of Children with Trisomy 18 and 13
From the SOFT 2020 Virtual ConferenceSession 1 of the Professionals Panel Dr. John Carey discusses Perspectives on the Care of Children with Trisomy 18 and 13. https://youtu.be/guSnYEeLW3Q
Video – Shining moments from the TRIS project
The first of a series of videos from the SOFT 2020 Virtual Conference. Deborah A. Bruns, Ph.D. shares shining moments from the TRIS project: An overview and review of activities with Deborah A. Bruns, Ph.D. https://youtu.be/FmNMPVj971g Download Slideshow About...
Megan Hayes (full Trisomy 18) Turns 40 years Old!
Megan Hayes, oldest known individual in the US (2nd oldest in the world) with Full Trisomy 18 has recently turned 40 years old. A longtime member of SOFT, Megan lives with her parents Ron and Sara Hayes in Oklahoma City, OK.To commemorate Megan's milestone her story...
2020 SOFT Virtual Conference is coming in July
The 2020 SOFT Virtual Conference planning is underway and we are really excited to share our event with you. The team has been working hard to make sure our virtual event feels as much like home as our in-person events do. Because of the virtual format, we have...
Black Lives Matter
Black Lives Matter SOFT is a family consisting of many beautifully diverse individuals. Loving a person with a trisomy condition is the glue that holds us all together. Today and every day, we stand with the many others that are protesting against the ongoing racial...
Video: Routine Health Care for Children with Trisomy 13
What should parents and medical professionals know and expect as reasonable health standards for children with Trisomy 13? Dr. John Carey, MD and medical advisor for SOFT discusses current medical standards and expectations for children living with Trisomy 18 or...
Video – Constipation 101
If you get any two or more parents of children with Trisomy together the conversation will inevitably turn to the subject of constipation. Constipation is one of the most common health issues that families of a child with a diagnosis of Trisomy 18, 13 or other related...
Attitudes Toward Hypothetical Uses of Gene-Editing Technologies
The following paper is an interesting article published recently in The CRISPR Journal. The main author, Erika Snure Beckman, performed this work for a Master’s degree while a genetic counseling student at Stanford University. She and her colleagues analyzed the views...