Posts Tagged ‘Patau Syndrome’
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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Aquatic Therapy
From the SOFT 2021 Virtual Conference. Aquatic Therapy – Briana Demars OTA
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Spectrum of Epilepsy in Trisomy 18 Syndrome
From the SOFT 2021 Virtual Conference Professionals Panel. Spectrum of Epilepsy in Trisomy 18 SyndromeDr. Agatino Battaglia, MD, DPed, DNeurol
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Newborn Airway Evaluation and Mandibular Distraction in Trisomy 18
From the SOFT 2021 Virtual Conference Professional Panel: Newborn Airway Evaluation and Mandibular Distraction in Trisomy 18Glenn E. Green, MD, Professor, Department of Otolaryngology-Head and Neck Surgery
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Perspectives on the Care of Children with Trisomy 18/13 – 2021 Version
From the SOFT 2021 Virtual Conference Professional Panel: 2021 Version of Perspectives on the Care of Children with Trisomy 18/13John C. Carey, MD, MPH, FAAP, FACMGG, Professor Emeritus, University of Utah
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Trisomy 18/13 – The Basics – 2021 Version
From the SOFT 2021 Virtual Conference: 2021 Version of Trisomy 18/13 – The BasicsJohn C. Carey, MD, MPH, FAAP, FACMGG, Professor Emeritus, University of Utah
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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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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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