Summer’s SCA Survival Story

In May of 2022, Summer went into Sudden Cardiac Arrest (SCA) on her front porch. Thanks to her husband’s quick actions, she survived. After her diagnosis of Long QT Syndrome (LQTS) Type 1, Summer is on a mission to spread awareness about CPR – and “invisible”...

Long QT Syndrome on a Cheerios Box: Adeline’s Story

Adeline was diagnosed the day after birth with Long QT Syndrome Type 2. Now, Adeline is one of ten Children’s Miracle Network National Champions, and is sharing her LQTS story on a Cheerios box in Costco throughout the month of May. “Adeline was born a healthy,...

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...

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...