About us
Our Mission
We provide clinicians around the U.S. with the resources and understanding to provide accurate, balanced, and current information, alongside shared decision-making support and quality care for children and families impacted by trisomies 13 and 18.
We collaborate with health systems, educational institutions, professional societies, and patient advocacy organizations to:
- Conduct research about trisomies 13 and 18
- Educate healthcare teams and families with the most up-to-date information
- Improve health care teams’ capacity to care for families at every stage – from prenatal diagnosis through to decisions about medical interventions spanning the prenatal period through adulthood
We fund research into the current care environment for trisomies 13 and 18 and support and educate clinicians to work together with families at every stage – from prenatal diagnosis through to decisions about medical care during infancy and beyond.
The Collaborative works to ensure every family impacted by trisomies 13 and 18 make the best choices for their unique circumstances.
Our VALUES
Our values ground the Collaborative’s work with the intention to convey respect for children with profound disabilities, their families, and the clinicians who care for them.
- We recognize the value of people with trisomies 13 and 18.
- We respect that families make different treatment choices based on their individual goals and priorities.
- We encourage families and clinicians to collaboratively approach medical decisions based on each child’s unique needs and challenges.
Meet OUR PROGRAM Committee & Staff
The Trisomy Collaborative is guided by our Program Committee and staff.
Benjamin Wilfond MD
Director, Trisomy Collaborative
Tesla Theoryn Ph(C) M.Ed.
Program Officer, Trisomy Collaborative
Katharine Press Callahan MD MSME
Assistant Professor of Pediatrics, University of Pennsylvania; Attending Neonatologist, Children’s Hospital of Philadelphia
John C. Carey MD MPH
Professor Emeritus, University of Utah School of Medicine; Chair of Medical & Scientific Advisory Committee, SOFT
Stephanie Meredith MA DrPH
Director of Development, Genetic Support Foundation; Supervisor, Lettercase – National Center for Prenatal & Postnatal Resources
Jacqueline Vidosh MD
Obstetrics Hospitalist, Ob Hospitalist Group
Our Steering Committee
Our work is informed by a multidisciplinary steering committee of experts and advocates. We are grateful for their devotion to achieving better care for families impacted by trisomy 13 and 18.
Jay Berry MD MPH
Associate Professor of Pediatrics, Harvard Medical School
Chief, Complex Care, Boston Children’s Hospital
Jeffrey R Botkin MD MPH
Emeritus Professor of Pediatrics, University of Utah
Stephen Braddock MD
Professor of Pediatrics, Saint Louis University School of Medicine
Director of Medical Genetics, SSM Health Cardinal Glennon Children’s Hospital
Josh Bradley BA
President, Support Organization for Trisomy 18, 13, and Related Disorders (SOFT)
Jennifer Castillo JD
Attorney, Castillo Law, PLLC
Barbara Farlow B.Eng.Sci. MBA
Founder, International Trisomy Alliance
Robert J. Graham MD
Associate Professor of Anesthesia, Harvard Medical School
Senior Associate, Department of Anesthesiology, Critical Care and Pain Medicine, Boston’s Children’s Hospital
Jennifer Kesselheim MD MBE M.Ed.
Associate Professor of Pediatrics, Harvard Medical School
Director of Graduate Medical Education, Boston Children’s Hospital
Katherine Kosiv MD
Associate Professor of Pediatrics, Yale School of Medicine
Steven Leuthner MD MA
Professor of Pediatrics, Medical College of Wisconsin
Medical Director, Children’s Wisconsin Palliative Care Program
Marsha Michie PhD
Associate Professor of Bioethics, Case Western Reserve University School of Medicine
Sandra F. Naoom PhD MSPH
Adjunct Assistant Professor of Maternal and Child Health, UNC Gilling’s School of Global Public Health
Maya Sabatello LLB PhD
Associate Professor of Medical Sciences, Columbia University
Stephanie L. Santoro MD
Associate Professor of Pediatrics, Harvard Medical School
Director of Quality Improvement Research in the Down Syndrome Program, Massachusetts General Hospital
Katie Stoll MS
Executive Director, Genetic Support Foundation
James St. Louis MD
Professor of Surgery, Medical College of Georgia
Christina Paidas Teefey MD
Maternal Fetal Medicine, Nemours Children’s Hospital
Sheria Wilson MD MA
Assistant Professor of Pediatrics, The Ohio State University College of Medicine
Attending Neonatologist, Nationwide Children’s Hospital
Explore our areas of focus
Three complementary approaches to improve care for families with trisomy 13 or 18.
The Trisomy Collaborative is a fiscally-sponsored project of the New Venture Fund, a 501(c)(3) public charity.
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