the gutsy perspective

Marie is a social scientist with a background in sociology, public health, and communication. She holds a position as project researcher at the University of Nebraska Medical Center (UNMC) in Omaha, NE. Outside of this project, Marie's work has focused on pediatric palliative care, parenting children with complex and critical illness, and parent-clinician communication. Marie is currently earning a PhD in communication studies at the University of Nebraksa- Lincoln. She is the mother of three kids, the youngest of whom has ultra-short bowel syndrome.  

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.

Jessica is an Assistant Professor of Psychology at Birmingham-Southern College. 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. Recently, she has served as a Family Leadership Trainee at Children’s of Alabama and her focus has extended to include pediatrics. Jessica is the adoptive mother of two daughters, one of whom has acquired short bowel syndrome resulting from Necrotizing Enterocolitis.  

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 active 6th grader. Amy joined the gutsy perspective to help other families feel validated through research and to offer her epidemiology and statistical skills. 

 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.