Lizzy's journey with Long QT Syndrome began at birth when a nurse noticed her low heartbeat, leading to comprehensive monitoring and the identification of her arrhythmia. She was immediately transported to the Children's Hospital of Philadelphia, where she was diagnosed with Long QT Syndrome Type 3.

The family hopes that by sharing their story, people will evaluate how prepared they are for a cardiac event. Whether it's through CPR training or having AEDs in schools, they want to change the narrative of "it won't happen to me".

Two weeks after doctors told her parents she was the “picture of health”, Abrielle suffered a sudden cardiac arrest. Fortunately, her father was able to perform CPR until emergency personnel arrived.

Rob’s message to the Long QT community is to not fear their diagnosis. He lives his life by the same philosophy he applies in racing: Control what you can control.

Lizzie hopes sharing her experiences raising a child with an ICD and diagnosed Long QT Type 15, she will reach people it can help.

The SADS Foundation is working with companies almost ready to recruit participants for first-of-their-kind clinical trials. But first, they need to learn more about the SADS community through this ten-minute survey so they can help connect you to research studies.

In July 2021, a team of former Indiana University Swim Team are competing in the Trans Tahoe Relay race to raise awareness of Long QT Syndrome and the need for advanced treatments, while raising funds for 4-yr old Isla who has LQT3.

Dave Hutton is a school teacher by profession, and a Long QT Syndrome caregiver by devotion. Upon his daughter Isla’s diagnosis with Long QT Syndrome Type 3 in 2016, Dave left teaching to be the full-time caregiver to his little girl.

Alexander Thomas is a 17 year-old dance prodigy born in South Florida. Alexander also has Long QT Syndrome, a condition shared by his mother, Palmire, and his brother, Adrien. This is their journey, shared with the LQTS community.