Tom’s CPVT Story

Tom and his daughter Meg Can you tell me a little bit about your SADS journey – from diagnosis to where your family is today? I’m the first one in my family to have this condition that we know of. I call myself the “mutant” – the one that first had the gene. As a kid,...

LQTS Awareness: Jackie’s Story

Jimmy, Jackie’s son Crissy, Jackie’s daughter Can you tell me a little bit about your SADS journey – from diagnosis to where your family is today? It was so common for our family to fall over having seizures, and back in the 1960s, they weren’t thinking...

ARVC: Stories from the Community

  Lizzie Name: Lizzie How and when were you diagnosed? I was diagnosed with ARVC in the middle of a career of ultramarathon running at the age of 31. I started to develop shortness of breath and weakness in my legs during my training runs, and not long after that I...

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...

ICD Stories: Katie Wildhagen

Can you tell me a little bit about your SADS journey? In the spring of 2000, I went into sudden cardiac arrest. After about four weeks of testing, they finally realized I had Long QT Syndrome. I went for six months without a device. My mom really advocated for me, and...