2022 Trisomy Awareness “SOFT” Wear Collection

March is Trisomy Awareness Month We are excited to release the 2022 Trisomy Awareness “SOFT” Wear Collection. Update: The special order of Trisomy Awareness Shirts is closed. You can still order directly from our Trisomy Awareness Store on Spri.ng.  This year we are doing something different and having our shirts screen printed. Because of this…

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Video – Perspectives on the Care and Management of Children with Trisomy 13 and 18 Syndromes

Intermountain Children’s Primary Hospital – Pediatric Grand Rounds John C. Carey, MD, MPH, FAAP, FACMG    Emeritus ProfessorUniversity of Utah School of MedicinePediatric Genetics  Primary Children’s Hospital Objectives: List the important manifestations and complications occurring in the 2 trisomy syndromes Identify the key issues surrounding the controversies in care of infants with trisomy 13 and 18

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Lean on Us: An Overview and Review of TRIS Project Activities

From the SOFT 2021 Virtual Conference Lean on Us: An Overview and Review of TRIS Project ActivitiesDeborah A. Bruns PhD The Tracking Rare Incidence Syndromes (TRIS) project seeks to increase the knowledge base on rare incidence trisomy conditions, and to make this information available to families and interested educational, medical and therapeutic professionals.

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Journey Hoffman

“Journey is not and never will be a diagnosis, she is Journey, and she has her own story to be written by the hand of God.” Theodore Roosevelt wrote, “Never throughout history has a man who lived a life of ease left a name worth remembering.” Journey Love’s name was chosen long before we knew…

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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 Edwards Syndrome. From the 2013 TrisomyTalk.com series of medical webinars. Dr. John Carey, MD and…

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