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.
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
Exercise and Movement Challenge – Address
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...
“Who knows how many others are out there?” – Miranda’s LQTS Story
When Miranda was eighteen, she learned that her health issues could potentially have been inherited from her biological father – who was a sperm...
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...
SADS EL-PFDD Testimonials
We need to hear YOUR voice, YOUR story, YOUR experience with LQTS so we can represent the scope of impact this condition makes on families and...