2023 Trisomy Awareness Profile Frames & Covers

Help Spread Trisomy Awareness with a Trisomy Awareness Profile Frame and Cover Image. To help our community speak with ONE VOICE to raise Trisomy Awareness SOFT has created Trisomy Awareness Profile Frames and Cover Images for you to use on your Facebook page and across all of your social media accounts. Below are this year’s…

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2022 Trisomy Awareness Profile Frames & Covers

Help Spread Trisomy Awareness with a Trisomy Awareness Profile Frame and Cover Image. To help you raise Trisomy Awareness SOFT has created Trisomy Awareness Profile Frames and Cover Images for you to use on your Facebook page and across all of your social media accounts. Facebook is limiting the number of organizations and companies that…

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SOFT Trisomy Awareness Month Video Blast

2021 SOFT Trisomy Awareness Month Video Blast

  Join us for the Trisomy Awareness Month video blast! The Trisomy Awareness Month video blast is coming and we hope you will join us. We are going to blast social media with short 60 second videos to inform and educate people about our SOFT kids and their various Trisomy conditions. We invite all of…

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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. About Deborah A. Bruns Ph.D:Deborah A. Bruns is Professor and Off-campus program coordinator for the Special Education program in the…

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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 disorder face. Managing your child’s bowels becomes a…

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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 of parents of persons with trisomy 21, trisomy 18, and trisomy 13 syndromes toward the new gene-editing technologies. The…

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Medical Providers May Not Deny Medical Care Based on Disabilities

The New York Times reports: “Federal civil rights office rejects rationing medical care based on disability or age.” The U.S. Department of Health and Human Services’ civil rights office told medical providers on Saturday that they may not deny medical care to people on the basis of their disabilities or age during the coronavirus emergency.…

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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 exhibitors: Ann & Frank Barnes, parents of Megan (T18) 1985-2004 Rhonda Yarrington & 3…

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