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.
Racing Forward: Alex Gasper’s Journey from WPW to Ironman and Medicine
From childhood fear to Ironman finisher and future physician, Alex's journey with Wolff-Parkinson-White (WPW) Syndrome shows the power of early...
Finding Strength in the Unknown: Juliana’s Journey with Brugada Syndrome
When 25-year-old Juliana from Switzerland was diagnosed with Brugada Syndrome - a rare heart condition that can cause sudden cardiac arrest - she...
“Pushing the Boulder Over the Mountain”: Matt’s ARVC Journey
Matt’s first symptom was Sudden Cardiac Arrest; his next act is resilience, as he learns to live - and dance - safely with ARVC. By: The SADS...
Finding Strength, Despite the Storm | Dalia’s Long QT Syndrome Story
After years of fainting episodes and misdiagnoses, Dalia discovered she was living with Long QT Syndrome - and turned her journey into one of...
“It can happen to anyone, at any age” | Ammon’s Sudden Cardiac Arrest Story
Ammon was diagnosed with a genetic heart condition called CPVT at just five years old after experiencing Sudden Cardiac Arrest (SCA) while playing...
Two Teens, Two Families, One Lifesaving Message: CPR & AEDs Save Lives
In neighboring Michigan communities, two families who had never met now share a lifelong bond - one forged in the most unexpected way: sudden...
Living with Brugada Syndrome | Michael’s Story
written by Michael Grivas I am 27 years old and I come from Greece. Four years ago… my life suddenly changed. When I learned that I have Brugada...
🦓 💗 Life in the Stripes | A “Rare Heart Club” Household
When Shane and Kristi’s middle son suddenly lost his hearing in 2022, their son underwent genetic testing to try and find the cause - which revealed...
Turning Loss into Hope for Families with Long QT Syndrome | Melissa’s Research Story
When Christie Tolosky died suddenly in 2005 at just 24 years old, her family and friends were in shock. She was a seemingly healthy and active young...
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...