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.
When the Diagnosis Comes: A Journey Through Shock, Grief, and Hope
by Sue Bresnahan When you first get a rare genetic diagnosis for your child, it’s like the floor disappears beneath your feet. As a pediatric nurse...
Alex’s ARVC Story
In college, Alex experienced her first symptom of a serious heart condition – which was dismissed at the time as a panic attack. It’s now been seven...
Kory’s Brugada Syndrome Story
I am a 26-year old with a rare heart condition called J-Wave Syndrome. I went into cardiac arrest in 2016 at the age of 18 and received my first ICD...
How a Genetic Counselor and a Furry Friend Served as ‘Buddies’ for Family Navigating Rare Genetic Diagnosis
In 2022, Patrick was diagnosed with an ultrarare genetic variant – CACNA1C – which can cause both neurological and cardiac symptoms. Today, Patrick...
Paul’s ARVC Story
In October 2014, Paul was at the gym when he suddenly collapsed. His doctors thought the cause was dehydration or stress - until he collapsed again...
Planting Trees with Heart: Treebute
In May of 2020, Elizabeth’s close friend passed away suddenly and unexpectedly. She tried to think of a way to support his family after this tragic...
“She took a piece of our hearts with her”: Morgan’s Story
Morgan was diagnosed with CPVT after passing out on the playground just before her tenth birthday. Morgan – an active, loving, and beautiful little...
Landri’s Jervell and Lange-Nielsen Syndrome (JLNS) Story
written by Landri My day-to-day life generally consists of school, friends, playing video games, and participating in activities that interest me....
Sarah’s Heart Story – Through the Eyes of her Mom and Advocate – Camila “Mila” Takahashi
Running your first marathon while raising money for the SADS Foundation is no easy feat; neither is figuring out how to tell your 9-year-old she has...
Underneath
by Kiersten Rock-Torcivia Who is this girl? What is on her chest? On her chest, just below her left collarbone, is a black oval outline shadowed...
Lauren’s ARVC Story
Nine months ago, on March 14, 2024 (National Pi Day, to be exact), something happened to me that didn’t make sense No matter how many highly...
DeLainee & Kerri’s Patient Pillows Bring Comfort and Connection
17 year old Delainee dreams of a day when she can connect with hospitalized children bringing them comfort and connection the way her mother, Kerri,...