by Terre Krotzer | Apr 6, 2020 | Medical Professionals, Resources, Trisomy 18
What should parents and medical professionals know and expect as reasonable health standards for children with Trisomy 18? Dr. John Carey, MD and medical advisor for SOFT discusses current medical standards and expectations for children living with Trisomy 18 or...by Terre Krotzer | Mar 28, 2020 | News
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...by Terre Krotzer | Mar 27, 2020 | Expecting A Child, Parenting A Child, Publications, Trisomy 18
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...by Terre Krotzer | Mar 25, 2020 | Expecting A Child, Resources
Birth Plan for Hannah Faith, diagnosed with Trisomy 18 On October 7th 2013, I was 14 weeks pregnant and expecting a call from our genetics counselor to reveal the gender of our third child! Her words, instead changed the course of my life. My child had Trisomy 18. I...by Jack and Dianna Aubele | Jan 25, 2020 | Medical Professionals, Parenting A Child, Related Disorders, Trisomy 13, Trisomy 18, Trisomy 9
Presented at the 2012 SOFT Conference, St. Louis Dr. Carey began by saying questions were welcomed. He also noted most participants were familiar with the basics of trisomy, so he would emphasize new information. The result was he completed about 10% of...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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