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,...

Hailey & Shannon’s Wolff-Parkinson White Syndrome Story

This September, Hailey competed in the national and world amateur divisions for aerial silks. “Doing aerial silks always makes me feel free, like I’m flying,” says Hailey. Aerial silks is a combination of contemporary dance and acrobatics, performed while suspended in...

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 Awareness: Jeff’s Story

Can you tell me a little bit about your ARVC journey – from diagnosis to where you are today? Jeff & his son at a baseball game I was diagnosed with ARVC in May of 2021, but I got my ICD in August of 2017. Given that ARVC is a genetic disease, I guess I had it in...

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...