Nicole’s LQTS Story

Nicole was diagnosed with Long QT Syndrome Type 1 at birth. Today, she’s in her last semester of medical school – and hopes to help others with rare diseases and disabilities access the support and expert medical care she received as a child with a SADS condition....

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...

Broken Hearts: Racing Against a Deadly Disorder

Thirty-nine. That’s how old I am. It’s also the age when my father died.  Losing my dad when I was just 11 years old has had a profound impact on me. Not only was I forced to navigate growing up without him, but I was also diagnosed with the same medical condition...