2015 Family Conference
July 30 - August 2 in Cincinnati, Ohio
"There were many late nights, long phone calls, and daring emails in the days leading up to the 2015 Heterotaxy Connection Family conference, but on July 30 the heterotaxy community showed up. Parents, patients, advocates, doctors, nurses, community members; they all arrived and turned out to uplift and support the heterotaxy community. At that conference many families met another heterotaxy family for the first time and bonds were sealed. The seeds sown at that gathering have bloomed, reseeded and bloomed again. It truly was a turning point for patients and families with this rare disease."
Heather Williams, co-founder of Heterotaxy Connection
"As you are sitting in a doctor's office hearing the word 'heterotaxy' for the first time, the future is scary and unclear. The other heterotaxy families I met online were able to share their experiences and offer hope, and while I was still scared, I knew I wasn't alone in the journey. The conference allowed me to meet this online community in real life, and an online community that had showered me with love and support became tangible in person. These are relationships that I continue to lean into even now, more than a decade into our journey."
Margaret Andorf, mom to Vivi (heterotaxy hero)
Speakers
Click on any speaker's photo to view the video of their presentation at the conference.
Stephanie Ware, MD
Clinical Genetics
Dr. Stephanie Ware, from Indiana University School of Medicine, provides an overview of heterotaxy syndrome and speaks on the current research in the area of diagnosis and causes of heterotaxy.
Kimberly Risma, MD
Pediatric Allergy & Immunology
Dr. Kimberly Risma of Cincinnati Children's Hospital and Medical center talks with families about the dangers of heterotaxy, functional asplenia and sepsis.
David Goldberg, MD
Pediatric Cardiology
Dr. David Goldberg, from the Single Ventricle Survivorship Program at the Children's Hospital of Philadelphia, talks with families about a study they might be interested in.
Henry Lin, MD
Pediatric Gastroenterology
Dr. Henry Lin of Children's Hospital of Philadelphia speaks regarding heterotaxy syndrome, the Fontan circulation, and how this circulation impacts the liver.
Pedro Del Nido, MD
Pediatric Cardiac Surgery
Dr. Pedro del Nido of Boston Children's Hospital describes unique challenges to biventricular conversion and repair in children with heterotaxy syndrome.
Melissa Henson
Child Life
Melissa Henson, child life specialist at Cincinnati Children's Hospital Medical Center, speaks regarding the role of child life during a hospital experience.