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...

Andy’s ARVC story

In 2016, Andy decided to complete a marathon in all fifty states. He wanted to finish this challenge quickly, and set a goal of running 10-12 marathons each year. In 2020, Andy experienced some concerning symptoms while training – including a high heart rate and...

#ThisisBrugada: Shane’s Story

Shane was diagnosed with Brugada Syndrome in March of 2021 after ending up the E.R. for a stomach bug. He had an ICD installed two months later. “I had asked my doctor for some medicine for my stomach bug, which just wasn’t going away,” says Shane. “They did an EKG as...

Heart Month Stories: Ishani’s LQTS Story

A normal summer day at the pool turned into a rare genetic heart condition diagnosis for thirteen year old Ishani. After feeling dizzy, Ishani visited with her doctor, who said she probably had low blood sugar – and suggested she have an energy drink. Two days later,...

ARVC Awareness: Nathan’s Story

During a typical morning run in August of 2022, Nathan became lightheaded and had to lie down on the sidewalk. After he was found by two other runners, he was taken to the hospital, where he was diagnosed with ARVC – and he’s joining the SADS Foundation ARVC Steering...