SOFT Leadership

Our Purpose

Supporting Families, Changing the Narrative

Learn About Our Mission

Board of Directors

The Board of Directors and Medical Advisory Board guiding SOFT's mission for individuals and families affected by Trisomy 18 (Edwards syndrome), Trisomy 13 (Patau syndrome), Trisomy 9, and related rare chromosome disorders.

Dawson, trisomy 18 (17 years old) · South Carolina

Josh and Renae Bradley are proud parents of four children. Their son Dawson, now 17, lives with trisomy 18. Josh brings years of nonprofit leadership, organization, and development experience to SOFT, including work with the SC Baptist Convention. He played a key role in revamping SOFT's mission statement and vision framework.

Arizona

Nick Holladay is the President/CEO of SOFT, continuing a connection to the organization that goes back to its founding. His mother, Kris Holladay, was one of SOFT's founding parents in 1980, and his sister Kari had trisomy 18. Nick grew up immersed in the community his family helped build, and he now leads SOFT's national programs and hosts the Talking Trisomy podcast alongside longtime SOFT medical advisor Dr. John Carey, bringing families and clinicians together to talk openly about life with trisomy conditions.

Dane, trisomy 18 (angel) · Tennessee

Jen and Steve are parents of three children. Their youngest, Dane, was born with trisomy 18. As trisomy parents and physicians, Jen and Steve bring organizational skill, multitasking, and leadership experience from prior Navy service. Jen also serves on the SOFT Medical and Scientific Advisory Board.

Stacy, trisomy 18 (angel) · New York

Barb and Dave VanHerreweghe are parents of two. Their daughter Stacy was the second oldest living child with trisomy 18 in the United States, living to almost 37 years old. Barb has spent her career fighting for the rights of medically fragile children and their families, and served as President of SOFT for over 30 years.

Utah

John C. Carey, MD, MPH, is Emeritus Professor in the Department of Pediatrics at the University of Utah School of Medicine. He serves as medical advisor and founding professional for SOFT, with a major academic focus on the medical and ethical aspects of caring for people with chromosomal syndromes. John and his late wife Leslie have two sons and have lived in Salt Lake City for over four decades.

Kari Deann, trisomy 18 (angel) · Arizona

Kris and Hal Holladay are parents of six children. Their second child, Kari Deann, was born with trisomy 18 and lived lovingly and beautifully for 10 years. Kris and Hal are the founding parents of SOFT (1981) and have remained continually involved as permanent board members and committee volunteers.

Morganne, trisomy 18 (angel) · Utah

Debbie and Jim Dye are parents of three. Their youngest daughter, Morganne, was born in 1998 with trisomy 18. Debbie has served as a board member and board secretary since 2012, hosted three SOFT conferences in Salt Lake City (2003, 2007, 2015), and has been an active member since 1999.

Madison, trisomy 18 · Virginia

Angie and Micah McCauley are the proud parents of two daughters, Madison (trisomy 18) and Emma. Angie helps things run smoothly and efficiently, working to create connections between families and medical professionals while helping spread accurate information about trisomy.

Mark, trisomy 13 (angel) · Florida

Gina and Glenn Csontos have four children. Mark, who had trisomy 13, has been an inspiration to their family. Gina and Glenn have been SOFT members since 1995. Gina is a Neonatal Nurse Practitioner who works with infants newly diagnosed with trisomy, and she is bilingual, supporting many Spanish speaking families on behalf of SOFT.

Akaiya, trisomy 18 (19 years old) · Illinois

Kelly and Sal Hernandez have three children. Akaiya was born with trisomy 18. Kelly chairs the social media committee, leads SOFT's presence during Trisomy Awareness Month each March, and has worked as a special educator for over 13 years.

Stephen R. Braddock, MD, is Professor of Pediatrics and Director of Medical Genetics at Saint Louis University and SSM Health Cardinal Glennon Children's Hospital. He also serves on the SOFT Medical Advisory Board, listed below.

Medical Advisory Board

Clinicians and researchers who guide SOFT's evidence informed approach to Trisomy 18 (Edwards syndrome), Trisomy 13 (Patau syndrome), and related rare chromosome disorders.

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 practices neonatology and pediatric palliative care at Lurie Children's Hospital of Chicago, co-directs a perinatal palliative care program, and leads a Trisomy Care Collaborative focused on improving postnatal care and outcomes for babies with trisomy 13 and trisomy 18.

Dr. Menon is board certified in pediatrics and pediatric cardiology by the American Board of Pediatrics. He earned his medical degree and doctorate in pediatrics from Baroda Medical College, India, completed residency at New York University Medical Center, and fellowships in pediatric cardiology at Mayo Clinic and cardiac MRI at the University of Virginia. He holds a Master of Science in Clinical Investigation from the University of Utah and is a professor of pediatrics there.

Staff Surgeon, Helen DeVos Children's Hospital, Grand Rapids (2021 to 2024). Associate Professor, University of Nebraska Medical Center, Omaha (2011 to 2021). Clinical Service Chief, Cardiothoracic Surgery, Children's Hospital and Medical Center, Omaha (2010 to 2021). Assistant Professor, University of Nebraska Medical Center, Omaha (2005 to 2011). Staff Surgeon, Children's Hospital and Medical Center, Omaha (2005 to 2010). Hospital for Sick Children Pediatric Cardiac Fellowship (2004 to 2005). University of Iowa Thoracic Residency (2001 to 2004). University of Nebraska General Surgery Residency (1994 to 2001). University of Michigan Inteflex Program, BS 1991, MD 1994.

Glenn E. Green, MD, is Professor of Pediatric Otolaryngology at Mott Children's Hospital, University of Michigan.

Stephen R. Braddock, MD, is Professor of Pediatrics and Director of Medical Genetics at Saint Louis University and SSM Health Cardinal Glennon Children's Hospital.

Martin J. McCaffrey, MD, CAPT USN (Ret), is Professor of Pediatrics in the Division of Neonatal Perinatal Medicine, Department of Pediatrics.

Jennifer L.H. Sogge, MD, is an anesthesiologist serving on the SOFT Medical Advisory Board. She also serves as Vice Chairman of the SOFT Board of Directors, listed above.

Ann Barnes, RN, co-authored the book Care of the Infant and Child with Trisomy 18 or Trisomy 13.

Lynne W. Stockman, DO, is board certified in Family Medicine and graduated in 1989 from Kansas City University of Medicine and Biosciences.

D Scott Showalter, MD, MPH, is retired from General Pediatrics.

Deborah A. Bruns, PhD, is a Professor at Southern Illinois University.

Katherine “Katya” Anne Kosiv, MD, is Assistant Professor of Pediatric Cardiology at Yale University School of Medicine.

Jamie and Kristi Lint have three children, Zion (trisomy 13, angel), Mariah, and Olivia.