SOFT 2021 Candle Lighting Remembrance Ceremony

Natalia Henner, MD

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.

Dr. Henner’s academic focus is on improving care for families of infants with life-limiting conditions, with a focus on system improvement and complex communication. Her passions are counseling at the borders of gestational viability, integration of palliative care in infants with severe bronchopulmonary dysplasia, and multi-disciplinary care for infants with Trisomy 13 and 18. She leads a Trisomy Care Collaborative at Lurie Children’s, which focuses on improving postnatal care and outcomes of babies with these conditions.

Jamie Lint, A.A.S.N

Internal Nurse Specialist in Tazewell County Virginia

Jamie & Kristi Lint have 3 children Zion, trisomy 13 (angel), Mariah, and Olivia.

Shaji C. Menon, MD

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.

Shaji C. Menon, MD

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.

Ann Barnes, RN

Mother of a child born with trisomy 18
Co-authored the book: Care of the Infant and Child with Trisomy 18 or Trisomy 13

James M. Hammel, M.D.

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)

Lynne W. Stockman, D.O

Board Certified in Family Medicine.
Graduated 1989 from Kansas City University of Medicine and Biosciences.

Josh Bradley

President
Dawson – trisomy 18 (17 years old)



South Carolina

Josh and Renae Bradley are proud parents to four children. Among their kids, Dawson, who is now 17 years old and living with trisomy 18. 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.

Renae Bradley

Director of National Conference
Dawson – trisomy 18 (Angel)



South Carolina

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.

Nick Holladay

Director of Technology



Arizona

Kelsey Hyman

Social Media Manager



South Carolina

Kelly Hernandez

Director of Social Media
Board of Directors
Akaiya – trisomy 18 (19 years old)



Illinois

Kelly and Sal Hernandez have three children. Akaiya was born with trisomy 18. Kelly serves as chairman of the social media committee to create and expand SOFT’s presence through social media. She is actively involved in all aspects of TAM (Trisomy Awareness Month) in March. Kelly has been a special educator for over 13 years. Kelly believes communication is one of the important ways that we keep the doorways open to each other and foster that feeling of respect for everyone’s unique perspective.

Gina Csontos

Board of Directors
Mark – Trisomy 13 (angel)



Florida

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.

Angie McCauley

Board of Directors
Madison – Trisomy 18



Virginia

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.

D Scott Showalter

MD, MPH
Retired, General Pediatrics

HOW SOFT HELPS FAMILIES

Join Our Email List

Deborah A. Bruns

Ph.D
Professor
Southern Illinois University

Katherine “Katya” Anne Kosiv

MD
Assistant Professor
Yale University School of Medicine
Pediatric Cardiology

Glenn E. Green

MD
Professor of Pediatric Otolaryngology
Mott Children’s Hospital
University of Michigan

Stephen R. Braddock MD

Professor of Pediatrics
Director of Medical Genetics
Saint Louis University
SSM Health Cardinal Glennon Children’s Hospital

Martin J McCaffrey

MD, CAPT USN (Ret)
Professor of Pediatrics
Division of Neonatal Perinatal Medicine
Department of Pediatrics

Jennifer L.H. Sogge

MD Anesthesiologist
Vice President – Member Support
Medical Advisory Board

Steven D. Cantrell

O.D.
Past President, SOFT
Board of Directors, SOFT
Family Practice Eye Care
Epilepsy Research

John C. Carey

MD, MPH
Emeritus Professor Department of Pediatrics
The University of Utah School of Medicine.

Your Name Goes Here

Your Profession Goes Here



Location

Lorem Ipsum is simply dummy text of the printing and typesetting industry. Lorem Ipsum has been the industry’s standard dummy text ever since the 1500s, when an unknown printer took a galley of type and scrambled it to make a type specimen book.

Your Name Goes Here

Your Profession Goes Here



Location

Lorem Ipsum is simply dummy text of the printing and typesetting industry. Lorem Ipsum has been the industry’s standard dummy text ever since the 1500s, when an unknown printer took a galley of type and scrambled it to make a type specimen book.

Debbie Dye

Board of Directors
Morganne – trisomy 18 (angel)



Utah

Debbie & Jim Dye are parents of three. Their youngest daughter, Morganne, was born in 1998 with trisomy 18. Debbie is a board member and serves as board secretary since 2012. The Dye’s have hosted three conferences in Salt Lake City in 2003, 2007 and 2015. They have been state contact/chapter chairs since 2002 and have been active members of SOFT since 1999.

Barb VanHerreweghe

President SOFT
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 living in the United States and survived to almost 37
years old. Barb has made it her career to fight for the rights of medically fragile children and their
families. She has been President of SOFT for over 30 years.

Terre Krotzer

Vice-President – Communication
Krissy – trisomy 18 (23 years old)



Washington

Terre makes her home in the lush Pacific Northwest in the shadow of Mt Rainier with her husband Randy, daughter Krissy who is 23 years old and has full trisomy 18. Krissy also has 4 incredible older brothers. Terre is a digital content and product creator with a background in sales and marketing. She has been on the SOFT board for over 10 years and serves with a passion for helping families traverse a hope-filled, heart-centered Trisomy Journey.

Jennifer Sogge

Vice President – Member Support
Medical Advisory Board
Dane – trisomy 18 (angel)



Tennessee

Jen & Steve are parents of three children. Their youngest child, Dane, was born with trisomy 18. As Trisomy parents and physicians, they are well-suited to serve the SOFT organization. Jen and Steve strengths include organizational skills, multi-tasking, and leadership experience as prior Navy officers.
Jen also serves on the SOFT Medical and Scientific Advisory Board.

Steve Cantrell

Immediate Past President
Medical Advisory Board
Ryan – trisomy 18 (angel)



Missouri

Steve and Peggy Cantrell are the parents of two children, Ryan (trisomy18) and Lauren. They have one grandchild, Amelia. Dr. Steven Cantrell is a family practice optometrist and researcher in St. Louis, MO. Dr. Cantrell has been observing our SOFT children for over 30 years noticing painful light sensitivity and seizures. This led to the discovery of protective eyewear, contact lenses and nutritional suggestions for our kids. Steve and Peggy have attended every SOFT conference between 1987 – 2023.

Dr. John Carey

Board of Directors
Medical Advisory
Founding Professional



Utah

John C. Carey, MD, MPH, is Emeritus Professor Department of Pediatrics, at the University of Utah School of Medicine. Dr. Carey serves as medical advisor and “founding Professional” for SOFT. The medical and ethical aspects of care of persons with chromosomal syndromes are currently his major academic interest. Leslie devoted her career to the care of mothers and children as a nurse midwife. John and Leslie Carey have two sons and have lived in Salt Lake City, Utah for over four decades.

Kris Holladay

Founding Parent
Board of Directors
Kari Deann – trisomy 18 (angel)



Arizona

Kris and Hal Holladay are parents of six wonderful children. Their second child, Kari Deann, was born with trisomy 18. She lived lovingly & beautifully for 10 years. They are the founding parents of SOFT (1981). They have been continually involved with SOFT as permanent board members and serve on various committees. They are dedicated to supporting families on their trisomy journey.

Raliene Banks

Board of Directors
Faith – trisomy 13 (angel)



Washington DC

Raliene and Josh Banks are the parents of Faith, born with full trisomy 13. Not knowing how long Faith would live, they treasured each moment until she passed when she was one week old. Raliene is actively working with expectant parents and hopes to provide support for them on their trisomy journey. Raliene and Josh serve in the Air Force as aviators and are currently stationed at the Pentagon.

SOFT 2021 Candle Lighting Remembrance Ceremony

From the SOFT 2021 Virtual Conference

Recent Posts

Recent Comments

Archives

Categories

Meta

SOFT Trisomy Awareness Month Products

Changing the NARRATIVE together lanyards.

SOFT Trisomy Strong Adjustable Wristlet

SOFT Trisomy Strong Face Masks

SOFT Trisomy Awareness Postcards