by Terre Krotzer | Aug 7, 2021 | Blog, News
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...by Terre Krotzer | Jul 15, 2020 | Blog, News, Related Disorders, Resources, Trisomy 13, Trisomy 18, Trisomy 9
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. Download Slideshow About Deborah A. Bruns Ph.D:Deborah A....by Success Engine | May 20, 2013 | Trisomy 18
Giving a Face to Trisomy 18: Debbie Elaborates on this Rare Condition Ava, Akaiya, and Annabelle, three little girls with full trisomy 18. The terms “incompatible with life” and “lethal anomaly” are often used to describe trisomy 18 (t18). Would-be parents are...by Jack and Dianna Aubele | May 20, 2013 | Trisomy 13
What is Trisomy 13? It is difficult to find the accurate prevalence data about trisomy 13 (t13). Some studies look to hospital registries while others focus on infants born in a specific state or country. Numbers are extrapolated and figures are shared. The common...by Jack and Dianna Aubele | May 20, 2013 | Trisomy 9
What is Trisomy 9? When I started on my trisomy journey, my reference point was children with trisomy 18. In the 1990’s, I found very little information about medical conditions, developmental needs and pretty much anything about growth and potential. Fast forward to...President
Dawson – trisomy 18 (17 years old)
Renae actively engages through the Social Media Committee, oversees State Proclamations during Trisomy Awareness Month (TAM), and is chair for SOFT’s state representatives. She holds the position of SOFT treasurer, bringing with her many years of administrative expertise.
Josh possesses significant experience in the field of non-profit leadership, organization, and development. Josh contributes his talents to the SC Baptist Convention. Notably, he played a key role in the revamping of SOFT’s mission statement and vision framework, furthering the organization’s overarching goals and objectives.
Director of National Conference
Dawson – trisomy 18 (Angel)
Josh and Renae Bradley are proud parents to four children. Josh and Renae are dedicated individuals who are passionate about SOFT’s mission to support families with children diagnosed with trisomy 18, 13, or related disorders.
Renae actively engages through the Social Media Committee, oversees State Proclamations during Trisomy Awareness Month (TAM), and is chair for SOFT’s state representatives. She holds the position of SOFT treasurer, bringing with her many years of administrative expertise.
Josh possesses significant experience in the field of non-profit leadership, organization, and development. Josh contributes his talents to the SC Baptist Convention. Notably, he played a key role in the revamping of SOFT’s mission statement and vision framework, furthering the organization’s overarching goals and objectives.
Director of Technology
Social Media Manager
Director of Social Media
Board of Directors
Akaiya – trisomy 18 (19 years old)
Board of Directors
Mark – Trisomy 13 (angel)
Gina and Glenn Csontos have four children. Mark (trisomy 13) has been an inspiration to their family. Gina and Glenn have been members of SOFT since 1995. Gina is a Neonatal Nurse Practitioner and has the opportunity to work with infants newly diagnosed with trisomy. They are bilingual and speak and write in Spanish. Gina has communicated with many Spanish speaking families on behalf of SOFT.
Board of Directors
Madison – Trisomy 18
Angie and Micah McCauley are the proud parents of two beautiful daughters, Madison (trisomy 18) and Emma. Angie has unique skills to help things run smoothly and efficiently. They want to continue to share their experiences and find opportunities for families to make connections with medical professionals and in education. They strive to spread awareness, to grow and expand our outreach, to provide accurate information on trisomy, while maintaining the family oriented value and goals of SOFT.
MD, MPH
Retired, General Pediatrics
Ph.D
Professor
Southern Illinois University
MD
Assistant Professor
Yale University School of Medicine
Pediatric Cardiology
MD
Professor of Pediatric Otolaryngology
Mott Children’s Hospital
University of Michigan
Professor of Pediatrics
Director of Medical Genetics
Saint Louis University
SSM Health Cardinal Glennon Children’s Hospital
MD Anesthesiologist
Vice President – Member Support
Medical Advisory Board
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