RESOURCES
All Resources
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...
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...
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...
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...
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...
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...
Common Problems of Babies with Trisomy 18 or Trisomy 13
A consistent list of problems and concerns has been reported by parents through the years. Viability of their newborn is their first concern, followed by decisions about management of care. Feeding difficulties and constipation are common, often lifelong problems; care of infants with these issues follows below.
International Trisomy Support Groups and Organizations
Provision of information and links does not constitute SOFT USA's endorsement of any group. The International Trisomy 13 and 18 Alliance (ITA) is a volunteer, not-for-profit organization focusing on...
