ARVC Awareness: Matthew’s Story

In October of 2022, Matthew was taking a dinner break during a World of Dance rehearsal in New York City when he experienced Sudden Cardiac Arrest (SCA). It was his first symptom of an underlying heart condition. A friend started CPR, and Matthew was shocked twice...

Brugada Syndrome Awareness: Leng’s Story

Can you tell me a little bit about your SADS journey – from diagnosis to where you are today? For me, the discovery of Brugada Syndrome was not triggered by any symptoms. My mother passed away from an unknown cardiac event. I knew she’d gone to the cardiologist many...

CPVT Awareness: The Berko Family Story

Every morning I am greeted with the same bittersweet reality. Bitter is just a taste of the eternal emotion of losing a child. Sweet is the ever-present gratefulness that one of our children came back to life after being pronounced dead.   We choose to share our...

Caryn’s Long QT Syndrome Story

I have a strong family history of relatives experiencing “heart attacks” (or perhaps cardiac arrests) and dying at a young age. When I was a kid, I thought everyone eventually died of these “heart attacks”.  In my family, the deaths were instant, and happened while...

Mark’s LQTS Story

About twenty years ago my older sister had an episode that almost took her life. Through this, she discovered she had a genetic disorder they called Long QT. At the time it was very foreign to doctors as well as us. Nobody had ever heard of this. Matter of fact, the...