Blog
Our SADS blog is your hub for stories, interactive forums, and posts about awareness topics like research, pregnancy, and exercise. Want to share your SADS journey? Reach out to [email protected] to connect!
To read memorial stories of those we’ve lost to SADS, visit our In Loving Memory wall.
Katherine’s SCA & HCM Story
Katherine could tell that something was wrong with her heart – but doctors kept telling her that she was a perfectly healthy eighth grader. After...
Preparing for Your Surgery
Preparing for Your Surgery If you have a SADS condition, you may be looking at having several types of surgeries for your heart. Below, you’ll find...
“I’m working with the technology that could have saved his life”
“I’m working with the technology that could have saved his life” Colin Peck’s Story In 2019, Colin Peck lost his brother, Brian, suddenly and...
Erin’s ARVC Awareness Story
I have always been an active person, particularly when it comes to exploring nature. Throughout my 20s, I was often backpacking, hiking, or going on...
What can I do in Chicago while I’m at the 2024 Family Conference?
What are some fun things to do while I’m in Chicago for the 2024 SADS Family Conference? The group rates we’ve negotiated at the hotel - just $159...
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...
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,...
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...
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...
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...
Clinicians and medical providers: ask your questions on clinical trials and gene therapy
View Current Clinical Trials for SADS Conditions