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Spectrum of Epilepsy in Trisomy 18 Syndrome

by Terre Krotzer | Aug 2, 2021 | Blog, Medical Professionals, Parenting A Child, Resources, Trisomy 13, Trisomy 18 | 0 comments

From the SOFT 2021 Virtual Conference Professionals Panel.

Spectrum of Epilepsy in Trisomy 18 Syndrome
Dr. Agatino Battaglia, MD, DPed, DNeurol

 
 

Recent Posts

  • 2024 SOFT Conference Workshop: Cardiac Surgery In Infants with Trisomy 18 and 13
  • Perspectives on the Care and Management of Children with Trisomy 13 & 18 Syndromes
  • The SOFT Nominating Committee Is Pleased To Announce
  • Pediatric study opportunity for Trisomy 18/13
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    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

    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

    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. 

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    D Scott Showalter

    MD, MPH
    Retired, General Pediatrics

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    Deborah A. Bruns

    Ph.D
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    Southern Illinois University

    Katherine “Katya” Anne Kosiv, MD

    Katherine “Katya” Anne Kosiv

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    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
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    Steven D. Cantrell

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    Past President, SOFT
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    Dr. John Carey

    John C. Carey

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

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    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.