Trisomy 13
Expectant Parent Book
Download a copy of the Trisomy 13 New and Expectant Parent Book
"*" indicates required fields
"*" indicates required fields
Interim Division Head, Palliative Care; Attending Physician, Neonatology
Northwestern University Feinberg School of Medicine
Dr. Henner completed a Neonatology fellowship at Tufts Medical Center in 2012, and a Pediatric Hospice and Palliative Care Medicine fellowship at Northwestern Memorial Hospital in 2015. She currently practices neonatology and pediatric palliative care at Lurie Children’s Hospital of Chicago. She is a co-director of a perinatal palliative care program, and serves as an interim Division Head of pediatric palliative care.
Internal Nurse Specialist in Tazewell County Virginia
Jamie & Kristi Lint have 3 children Zion, trisomy 13 (angel), Mariah, and Olivia.
Pediatric Cardiology
UPMC Heart and Vascular Institute
Chambersburg, PA
Shaji Menon, MD, is a pediatric cardiologist with UPMC Heart and Vascular Institute and is board-certified in pediatrics and pediatric cardiology by the American Board of Pediatrics. He received his medical degree and Doctorate in Pediatrics from Baroda Medial College, India. He completed his residency at New York University Medical Center, followed by his fellowships in Pediatric Cardiology at Mayo Clinic and Cardiac MRI at the University of Virginia. Dr. Menon also completed a Master of Science in Clinical Investigation from the University of Utah. He is a professor of pediatrics at the University of Utah.
Pediatric Cardiology – University of Pittsburgh Medical Center
Shaji Menon, MD, is a pediatric cardiologist with UPMC Heart and Vascular Institute and is board-certified in pediatrics and pediatric cardiology by the American Board of Pediatrics. He received his medical degree and Doctorate in Pediatrics from Baroda Medial College, India. He completed his residency at New York University Medical Center, followed by his fellowships in Pediatric Cardiology at Mayo Clinic and Cardiac MRI at the University of Virginia. Dr. Menon also completed a Master of Science in Clinical Investigation from the University of Utah. He is a professor of pediatrics at the University of Utah.
Mother of a child born with trisomy 18
Co-authored the book: Care of the Infant and Child with Trisomy 18 or Trisomy 13
Staff Surgeon, Helen DeVos Children’s Hospital
Grand Rapids, MI (2021-2024)
Associate Professor, University of Nebraska Medical Center, Omaha (2011-2021)
Clinical Service Chief, Cardiothoracic Surgery, Children’s Hospital and Medical Center, Omaha (2010-2021)
Assistant Professor, University of Nebraska Medical Center, Omaha (2005-2011)
Staff Surgeon, Children’s Hospital and Medical Center, Omaha (2005-2010)
Hospital for Sick Children Pediatric Cardiac Fellowship (2004-2005)
University of Iowa Thoracic Residency (2001-2004)
University of Nebraska General Surgery Residency (1994-2001)
University of Michigan Inteflex Program (BS 1991, MD 1994)
Board Certified in Family Medicine.
Graduated 1989 from Kansas City University of Medicine and Biosciences.
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
