2019 Family Conference
July 25-28 in Salt Lake City, Utah
"I loved meeting other kids with heterotaxy. It was really the first time I remember being with other kids like me. It was so fun when we were at the pool party because the other kids had the same scars as me. We were showing each other. That made me feel good."
Ethan Chandra (heterotaxy hero)
"In the immediate wake of losing my heterotaxy hero, attending the 2019 Heterotaxy Connection family conference connected me with the faces and names who've loved and supported him at every turn and who've shared that love and support with me in his absence. Having a community to lean into, not only digitally but in real life space, was such a healing experience.
Katie Elizondo, heterotaxy widow
"What a wonderful experience to attend the Heterotaxy Connection family conference. To be with other heterotaxy kids and their parents was a real joy. To see the kids and siblings having the best time ever with all the fun that was carefully planned for them was amazing. It was great to help run the kids' program while the parents were in their sessions. As I listened to others share about the challenges, triumphs, and sorrows with their heterotaxy children, I realized that we were not alone in this."
Fiona Wilks, grandmother to a heterotaxy hero
Speakers
Click on any speaker's photo to view the video of their presentation at the conference.
Pedro Del Nido, MD
Pediatric Cardiac Surgery
Our keynote speaker in 2019, Dr. Pedro Del Nido, is the Chairman of Cardiovascular Surgery at Boston Children's Hospital. His pioneering work in developing techniques for biventricular conversion and left ventricular recruitment has been crucial in establishing new surgical options for children born with heterotaxy syndrome and complex congenital heart defects.
Stephanie Ware, MD, PhD
Professor of Clinical Medical & Molecular Genetics
Stephanie M. Ware, MD, PhD, is a Professor of Pediatrics and Medical and Molecular Genetics, Vice Chair of Clinical Affairs in Medical and Molecular Genetics, and Program Leader in Cardiovascular Genetics, Herman B Wells Center for Pediatric Research, Indiana University School of Medicine. Her research laboratory has made significant contributions in the areas of congenital heart defects and cardiomyopathy.
Adam Shapiro, MD
Pediatric Pulmonology
Dr. Shapiro is a pediatric pulmonologist in Montreal, Canada, who specializes in primary ciliary dyskinesia (PCD); he’s involved with the first and only dedicated PCD clinic in Quebec.
Laura Bennett-Murphy, MD
Clinical Psychology
In the heterotaxy community, the physical effects of heterotaxy syndrome are often what we focus on while mental health takes a back seat. Dr. Laura Bennett-Murphy, a clinical psychologist at Primary Children's Hospital in Salt Lake City, Utah, is seeking to address that as she works with children who are diagnosed both with physical and mental illnesses.