2023 Family Conference

July 20-23 in Salt Lake City, Utah

"In the summer of 2023 our family went on the trip of a lifetime. Fifteen national parks, zoos and aquariums all across the country, Disneyland, and the Heterotaxy Connection family conference. Avery, our 11-year old daughter with heterotaxy, loved the conference most of all. It means the world to our family to spend time with other families who truly understand what our lives are like and care almost as deeply about our children and their futures as they do about their own."

Jenna Kalk, mom to Avery (11, heterotaxy hero)

"My brother has heterotaxy so a lot of what happens to him is just him. The conference was something we could do together without me being excluded. I got to meet other kids who have a brother or sister with heterotaxy; not everyone knows what that’s like."

Zoe Chandra, sister to Ethan (9, heterotaxy hero)

"Virtually attending the Heterotaxy Connection conference was such an invaluable experience for me. It was one of the first moments where I felt surrounded by people who truly understood what I was going through, and it brought community into my life at a time when I never felt more isolated."

Rachel Mattingly, mom to Owen (1, heterotaxy hero)

"As a family of four living in Pennsylvania still navigating the continuous presence and impact of COVID-19, we were unable to attend the Heterotaxy Connection family conference in person in Utah during the summer of 2023. However, we were thrilled to have the option to attend virtually and be able to learn the incredibly valuable information shared by the presenters, as well as members of the heterotaxy community. The HC Board ensured those of us attending virtually felt connected and included in as much as feasibly possible through the use of technology. Our heterotaxy community spans the globe, and as a rare disease, the ability to have this direct connection to hear from medical professionals conducting research and spearheading medical advancements in heterotaxy care continues to be so very important. Equally important is the ability to find support through one another in our community, as we all walk unique paths. We are truly grateful to Heterotaxy Connection for continuing to support our community and finding ways to utilize technology to build stronger connections and enhance learning for our global community."

Tiffany Kurzawa, mom to an 11-year old heterotaxy hero

"There were kids of different ages that could teach each other about themselves. People made me feel welcomed. They have experienced stuff like me and understand. They seem like the only other kids who actually believe me when I talk about everything I have been through."

Lauren Bloom, 9 (heterotaxy hero)

When I was asked to be a participant on a panel titled 'The Highs and Lows of Heterotaxy,’ I was nervous. My daughter Seraphina had died in July 2020, and I wasn't sure I knew how to best capture everything that was involved in her 8 year journey. Being part of our conference gave me the chance to connect with all our families who are fighting so hard for the promise of a brighter future for our kids, and it also gave me the opportunity to see that I had more that I could contribute to our cause. I now volunteer for Heterotaxy Connection on a part-time basis, helping to identify possible grants and sources of funding that will enable us to better serve our families and support our research community.

Seraphina, the very best gift I have received in this life is the privilege of being your mother. Every day, you continue to inspire me to help create a world where more and more children diagnosed with heterotaxy thrive and are given the chance to grow old. I love you, always and forever.

Rene Harrell, mom to heterotaxy angel Seraphina

Speakers

Click on any speaker's photo to view the video of their presentation at the conference.

Thomas Saba, MD

Pediatric Pulmonology

As a pediatric pulmonologist, Dr. Saba specializes in asthma, bronchiectasis, and primary ciliary dyskinesia. He has extensive experience with common as well as rare pulmonary conditions with procedural skills, including bronchoscopy, to pursue advanced diagnostic testing when a diagnosis is unclear.

Elle Geddes, MD

Associate Professor of Clinical Medical & Molecular Genetics

Dr. Geddes is a pediatric medical geneticist who specializes in cardiovascular genetics. Her primary focus is improving the care for patients with congenital heart disease using genetics while still providing cost effective evaluations and care.

David Schidlow, MD

Cardiology, Heterotaxy Program Director

Dr. Schidlow is a pediatric cardiology specialist in Boston, Massachusetts, where he is the director of the heterotaxy program, the first and only program in the country who work as a team to care for patients with heterotaxy syndrome. Their goal is to provide a proactive approach to each patient’s care, providing regular screenings and check-ups, rather than waiting for potential problems to arise.

Christopher Broda, MD

Cardiology, Fontan Clinic

Kelly Kelso, NP

Pediatric Palliative Care

Kelly Kelso worked at Primary Children’s Hospital for over 20 years before joining the Rainbow Kids Palliative Care Team in 2013. She loves working longitudinally with families to develop the goals for their child’s care that is representative of their personal values and beliefs. Kelly lives with her husband and 2 children in SLC. She loves spending time in the outdoors hiking, mountain biking, and camping with her family.

Aimee Lybbert

Masters of Social Work Student

Aimee Lybbert is a current Master of Social Work student at the University of Washington. Her focus of study is the impact that the illness of a child has on the individuals and relationships within the family unit. Professionally, she has worked with medically complex children as a Recreational Therapist and a social worker, but above all, it is her lives experience as a fellow heterotaxy parents that uniquely qualifies her to speak on the challenges facing caregivers and what protective factors can help to combat burnout.