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.
The Importance of Family History: Patrei’s LQTS Story
The SADS Foundation encourages families to take a medical history of their immediate and extended family. What follows is a prime example of why....
Letting Go
by Danielle Mundondo It’s been over five years since I last wrote. That piece was called Holding My Breath. Today, I come to you with its natural...
SADS Foundation thanks outgoing CEO Alice Lara
Our Foundation has some exciting – and also a bit sad – organizational news to share: CEO & President, Alice Lara, is retiring this month after...
Antwan’s SCA Story
Antwan experienced Sudden Cardiac Arrest in middle school - leading to a diagnosis of Hypertrophic Cardiomyopathy (HCM). Today, he wants other teens...
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....