Raising Awareness: Madison’s Story

Madison is one of only 60 people worldwide diagnosed with a rare PPA2 cardiac mutation. This drawing – inspired by her heart journey – is currently a finalist for the Google Doodle 2023 Scholarship, which would provide both Madison and SADS with funds – and help raise...

Brugada Awareness: Ruben and Grace’s Story

Can you tell me a little bit about your SADS journey – from diagnosis to where your family is today? It all started in September 2019, when my son, Ruben, was hospitalized – that was the first time we ever heard of Brugada Syndrome. He had a lung infection, and his...

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...

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,...

Kiersten’s Story: Making a Difference

Can you tell me a little bit about your SADS journey? I’m a junior in high school. I used to be figure skater until I was diagnosed with ARVC, and that’s how I found out that I had it – I was skating when I had some arrhythmias. After a long process of being...