by SOFT | Mar 25, 2021 | Blog, Family story, Stories
“This little girl, who cannot do anything to care for herself, is so filled with love that no matter how much she needs; she still gives far more than she takes. She is a beacon of light. She has taught us to believe in possibilities. She has taught us what it...by SOFT | Mar 24, 2021 | Blog, Family story, Stories
“Whenever one of us needs a pick-me-up, we can always count on Tabitha to respond to snuggles with affectionate smiles. Although Tabitha may not contribute to society in the same way as her siblings, the lives she touches are forever changed for the...by SOFT | Mar 23, 2021 | Blog, Family story, Stories
“Freya is sassy, sweet, silly and is always letting us know what she thinks. She smiles, laughs, plays, and keeps us all on our toes.” We first recieved Freya’s diagnosis through a blood test called an NIPT. I was approximately 20 weeks at the time...by SOFT | Mar 22, 2021 | Blog, Family story, Stories
“He has taught us so much already! We are blessed to have Augustinas in our family.” When my pregnancy reached eighteen weeks, we had an ultrasound that resulted in Patau syndrome as my son’s diagnosis. I was told that there was a huge possibility of...by Terre Krotzer | Jan 30, 2021 | Blog, Family story, Stories
We have had a really happy, healthy second year with Claire! She’s been to the beach and is learning to crawl. She loves music, especially Raffi, and is very ticklish. At our 20 week anatomy scan, we were shocked. Our baby’s eyeballs were so underdeveloped, the doctor...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
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.
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