My Experience Participating in a Clinical Trial for LQTS

written by Melissa If you’re anything like me, hearing the term “clinical trial” generates some conflicting reactions. There’s excitement over the possibility of a game-changing treatment on the horizon, and at the same time, there’s some fear in the idea of...

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...