Heterotaxy Connection Hosts Successful Family Conference
"There really aren't words to express what this conference has meant to our community," said Alison Chandra, Vice President of Heterotaxy Connection. "It was truly a powerful experience to witness our families connecting in such meaningful ways by sharing stories, laughter, and tears. We watched children compare scars; we released butterflies in remembrance of our heterotaxy angels; and we honored heterotaxy heroes in our Warrior Wall. Our families primarily interact via social media, so seeing these relationships come to life in person was profound."
Twenty-one families, including 14 children with heterotaxy syndrome, ranging from 1-13 years old, attended the conference. While parents and other caregivers attended conference programming, a variety of entertainment was provided for children.
"In addition to bonding with other heterotaxy families, our families learned a great deal from the expert speakers," said Necia Munro, President and Co-Founder of Heterotaxy Connection. "There is so much that remains unknown about heterotaxy syndrome so learning about cutting edge work in this area was extremely informative."
Heterotaxy Connection is committed to building upon the energy generated at the conference. Numerous medical professionals remain uninformed about heterotaxy syndrome, and many heterotaxy families continue to be isolated. The organization will work to broaden its scope to reach more families, increase public awareness, and continue interacting with the medical community.
"To see our progress since Heterotaxy Connection was founded in 2014 is incredibly rewarding," said Munro. "We are reaching more families than ever before and expanding collaborations with heterotaxy experts. I am really excited about the direction our organization is headed."