Stories from the LQTS & CPVT EL-PFDD

In June 2024, the SADS Foundation is bringing the LQTS and CPVT patient communities together for an FDA Externally-Led Patient-Focused Drug Development Meeting (EL-PFDD). This meeting gives the FDA and other key stakeholders — including researchers, biopharma...

Callie’s LQTS Story

Can you tell me a little bit about your SADS journey – from your first symptom to where you are today? I had an arrhythmia while I was driving in August of 1998. While I was in the hospital, the doctor noticed a prolonged QT interval. My mother had passed away...

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...

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...

SCA Awareness: Monica and Logan’s Story

Can you tell me a little bit about your family’s SADS journey – from diagnosis to where you are now? Our journey is about my son, Logan. He passed away a little over three years ago on October 31, 2019. Logan had just turned 19 and was off at college. He...