Posts Tagged ‘Patau Syndrome’
2023 SOFT Trisomy Awareness Month Spotlight
Trisomy Awareness Month begins March 1st! Throughout the month we will be spotlight our precious SOFT children. Submit your child’s photo today to be featured during Trisomy Awareness Month. Photos will be shared on SOFT’s social media. Fill out this form and upload your child’s photo to be included in this year’s spotlight. We look…
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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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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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