- June 3, 2019
-- Heterotaxy Connection, a nonprofit organization dedicated to supporting, educating, and empowering families affected by heterotaxy syndrome, is excited to announce the panel of expert speakers who will be presenting at the organization's 2019 Family Conference. The panel includes leading experts in the diagnosis and treatment of heterotaxy and related disorders.
"We are thrilled to announce the renowned group of speakers who will be presenting at our conference in Salt Lake City in July," said Necia Munro, President and Co-Founder of Heterotaxy Connection. "The speakers will address a range of cutting edge topics pertinent to the heterotaxy community. Our families will get a chance to learn about the latest heterotaxy cardiac interventions from one of the top national experts in complex heart defects. We also have speakers addressing recent developments in the understanding of primary ciliary dyskensia, a disorder characterized by chronic respiratory problems that often co-occurs with heterotaxy syndrome. Mental health issues will also be addressed. In the heterotaxy community, the physical effects of heterotaxy syndrome are often what we focus on while mental health takes a back seat. This year, we are committed to also discussing the importance of psychological health."
The conference will feature Dr. Pedro Del Nido, 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. Dr. Stephanie Ware is a clinical geneticist in Indianapolis, Indiana who is affiliated with multiple hospitals, including Cincinnati Children's Hospital Medical Center. With a focus on heterotaxy, she also explores the genetic links between heterotaxy and primary cilliary dyskinesia. Dr. Adam Shapiro is a pediatric pulmonologist in Montreal, Canada, who specializes in primary ciliary dyskinesia. He's involved with the only primary ciliary dyskensia clinic in Quebec, in partnership with the Genetic Disorders of Mucociliary Clearance Consortium (GDMCC), of which Heterotaxy Connection is also a part. Dr. Laura Bennett-Murphy, a clinical psychologist at Primary Children's Hospital in Salt Lake City, Utah, will address mental health challenges faced by children who are diagnosed both with physical and mental illnesses.
"We are very grateful to have organized such talented group of specialists,"
said Munro. "In addition to hearing directly from the experts during their scheduled talks, families will have the chance to directly communicate with these professionals. We are excited to provide our families with this rare opportunity."https://www.heterotaxyconnection.org/