Raising Awareness: Babett’s LQTS Story

In 2016, Babett’s daughter, Joriale, passed away from LQTS. This year, her book about her family’s journey was published – helping Babett spread awareness in honor of her daughter. In January of 2016, my daughter, Joriale, passed away from Long QT Syndrome. Nine...

LQTS Awareness: Dick’s Story

Can you tell me a little bit about your SADS journey – from diagnosis to where your family is today? In 1991, I was a single dad living in Houston. I was a minister with a great church, a daughter at Baylor University, a 15-year-old son and his 13-year-old brother. My...

ARVC Awareness: Mike’s Story

In 2001, Mike’s sister, Jackie, passed away at the age of 31 from undiagnosed ARVC. Mike, his brother, and Jackie’s husband, Adam, formed a support network for affected individuals and their families. Adam is cycling across Canada to raise awareness of ARVC, connect...

Raising Awareness: Jordan’s Story

Jordan was a happy, healthy, and beloved 26-year-old when he died suddenly from an undiagnosed SADS condition in November of 2019. “I had never even heard of SADS conditions until we lost Jordan and read the acronym ‘SADS’ on the coroner’s report,” says his mother,...

ARVC Awareness: Adam’s Story

Can you tell me a little bit about your family’s ARVC story? The first time our family heard of ARVC was in 2018 when my son, Greg – after the first of five Sudden Cardiac Arrests he’d experience in his lifetime – received the diagnosis. Seventeen years earlier, my...