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.
“I Had To Do Something”: An Interview with Rare Disease Advocate Courtney Waller
February 28th is Rare Disease Day. The main objective is to raise awareness amongst the general public and decision-makers about rare diseases and...
Heart Hero: Terry
Terry Bishop was nominated as a Heart Hero by his wife, Whitney. He lives with Brugada Syndrome....
SADS Spotlight: Waylon
Name: WaylonAge: 10 monthsWhich SADS condition do you have? Long QT Type 1 When were you diagnosed? 4 months old How are you treated? Beta blocker...
SADS Spotlight: Tasha
Name: Tasha Kempton Age: 43 Which SADS condition do you have? LQT2 When were you diagnosed? 1992 How are you treated? Beta Blocker & ICD...
SADS Spotlight: Dawn
Name: Dawn BarnettAge: 71Which SADS condition do you have? Long Qt Syndrome 11When were you diagnosed? 2005How are you treated? beta blocker,...
SADS Spotlight: Daiana
Name: Daiana Age: 21Which SADS Condition do you have? Long QT Syndrome When were you diagnosed? Age 17 How are you treated? Beta...
SADS Spotlight: Stephanie
Stephanie and her husband on a recent night out at the theater Name: Stephanie Swor Festian Age: 45 Which SADS condition do you have?...
SADS Spotlight: Lauren and Avery
Lauren and Avery Hannah Ages: 38 and 7 Condition: Long QT Syndrome Type 1, I was diagnosed at 13, Avery was diagnosed at birth. Treatment: We are...
My Heart: The Fragile Flower
Read Kennedy’s previous post for the first installment of her story. January 23rd. Some recognize this date as the day Richard Nixon announced an...
A Place for You
Back in 2016, I came across this special camp for kids with heart disease called Camp Taylor in Modesto, California. You see, I was in the midst of...
Day By Day: Learning to Live with LQTS
I have a life threatening heart condition called Long QT Syndrome (LQTS). I have an implantable cardioverter-defibrillator (ICD), a small...
Fragments of Hope
Mama’s house is gone Fragments remain as part of That once vital family I am one of those fragments My name is Mary I have a story to tell...