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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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 was featured on two news channels in Oklahoma…

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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 stretched conference out a few days. It…

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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 injustice prevalent in our society. The countless lives that have been lost are…

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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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I know we might not have known each other long. Maybe you’re a friendly cashier, or someone buying the same grapes as me at the grocery store. Maybe we’re taking turns on a machine at the gym, or we just met at a professional development opportunity. We make friendly banter, which I’m probably not enthused…

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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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How to Support a Parent in Grief Wisdom from Bereaved Parents of Children Diagnosed with a Syndrome “People told us that having him would be the hardest thing we ever did.  But they were wrong. The hardest part is not having him.”  Patricia Farmer, Joey, Trisomy 13 “If you are lucky enough to have not…

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When your physician first tells you that your baby may have trisomy 13 (Patau syndrome) or that this diagnosis is suspected, you will be overwhelmed with questions. The first question usually is “What is trisomy 13?” This book was written to answer some of these questions, to share insights of parents of children with trisomy…

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When your Physician first tells you that your baby may have Trisomy 18 (Edward syndrome) or that this diagnosis is suspected, you will be overwhelmed with questions. The first question usually is, “What is trisomy 18”? This guidebook was written to answer some of these questions, to share insights of other parents of children with…

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