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.
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...
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...