Who we are
We are a group of professionals who have all been touched by SBS in one way or another. Our professional backgrounds are in social science, public health, psychology, and mental health counseling.
We grew frustrated with existing research on quality of life for children with SBS and their families, which has largely focused on limitations and symptoms, and not paid enough attention to the multidimensional experiences of those living SBS life.
We want to change that.
Marie L. Neumann, PhD
social scientist. SBS parent.
project leader
Marie is an Assistant Professor in the Department of Surgery at the University of Nebraska Medical Center (UNMC) in Omaha, NE. With a background in sociology, health communication, and patient-reported outcomes research, Marie's work has included studies on quality of life, caregiver coping in the context of pediatric chronic illness, and pediatric palliative care. Marie is the mother of three kiddos, the youngest of whom has IF.
Swapna Kakani, MPH
rare disease advocate. SBS patient.
core research team member
Swapna was diagnosed with SBS at birth and has lived on parenteral and enteral nutrition for most of her life. In 2014, she received an isolated small bowel transplant. Through her platform, Swapna Speaks, Swapna has done award-winning healthcare advocacy work for the Short Bowel Syndrome/Intestinal Failure and broader rare disease communities. She has also given several presentations across the world to various healthcare companies and associations, hospitals, and non-profit events, and a TEDx talk in 2017.
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Jessica Y. Allen, PhD
social scientist. SBS parent.
core research team member
Jessica is an Assistant Professor of Psychology at Samford University. Trained as a gerontologist, Jessica’s expertise includes psychosocial well-being among caregivers and individuals living with chronic illness. She has conducted research in areas of caregiver stress and coping, advance care planning decisions, and bereavement. Jessica is the adoptive mother of two daughters, one of whom has acquired short bowel syndrome resulting from Necrotizing Enterocolitis.
Amy Ladner, MPH
epidemiologist. SBS parent.
core research team member
Amy is an epidemiologist with a background in drug safety and the parent of a child with SBS due to NEC, who is now EN and TPN-free and an teenager. Amy joined the gutsy perspective to help other families feel validated through research and to offer her epidemiology and statistical skills.
Meghan Hall Rauen, LPCA/NCCⓇ
clinical mental health counselor. nonprofit CEO.
SBS community advocate. core research team member
Meghan is a licensed mental health counselor for families and children with chronic and terminal illness and founder/CEO of The Global Gastroschisis Foundation. Her research and training center around bioethics, palliative care and clinical mental health with complex and terminal pediatric and neonatal patients, families and clinicians.