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.
Frances’ ARVC Story
by Frances S. In the spring of 2025, I went for my yearly physical and it was discovered via EKG that I was having a decent amount of premature...
In Memory of Adam Wilkens
In 2019, Amy lost her husband, Adam, to undiagnosed Brugada Syndrome – leaving family, friends and their two young boys, who were just three and six...
Francesca’s Heart Journey – From Patient to Advocate
At just 16 years old, Pennsylvania high school student Francesca is a rare heart condition advocate. She’s independently partnering with mega...
A Life Cut Short, A Legacy Goes On | Ryan Weidler Golf Tournament Fundraiser
Ryan Weidler’s ideal summer day would have included sports, especially basketball, golf, baseball, and outdoor fun and laughter with family and...
Meet Our CEO Walker Frahm
Do you have a personal connection to the SADS Foundation? In 2022, our daughter Lavinia—Lovey—passed away as the result of an undiagnosed cardiac...
💛 Our Daughter Liv: A Story of Love, Resilience, and Hope
With this blog, I want to begin something that has lived inside me for a long time. I’m sharing the story of our daughter Liv because I feel it...
Brandon’s LQTS Story
Brandon had six “fainting” episodes before the age of ten before he learned that he has Long QT Syndrome, a condition that affects the heart’s...
Caring for a child with a chronic condition: a guide for parents and caretakers
In the fall of 2013, Steve and his wife traded swim practice drop-off and pick-up duty for long nights under the glaring fluorescent lights of a...
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...