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.
SADS Spotlight: Richard Lamphier, RN
Name: Richard LamphierLocation: Atlanta, GA Occupation: Program Manager Project S.A.V.E of Children's Healthcare of Atlanta, an affiliate...
SADS Spotlight: Olivia
Name: Olivia KenworthyAge: 12Which SADS condition do you have? Long QT Syndrome When were you diagnosed? 2 yrs oldHow are you...
A Home Away From Home, A World Away
by Alexis H. Since receiving my diagnosis of LQTS Type 5 at the age of 12, I had always wanted to go to a heart camp. The children’s hospital where...
A Home Away From Home, A World Away
Since receiving my diagnosis of LQTS Type 5 at the age of 12, I had always wanted to go to a heart camp. The children’s hospital where I received...
SADS Spotlight: Aurora
Name: Aurora Age: 2Which SADS condition do you have? Timothy SyndromeWhen were you diagnosed? 10 months for LQTS & 1 year for Timothy...
SADS Spotlight: CJ
Name: CJ HeilAge: 20Which SADS condition do you have? Long QT SyndromeWhen were you diagnosed? Oct. 2010How are you treated? Beta Blocker (Nadolol)...
SADS Spotlight: Brody
Name: Brody NavarroAge: 8Which SADS condition do you have? Long QT Syndrome (calm 1 gene) When were you diagnosed? May 11, 2016 age 5 How...
LIVE-LQTS
Calling LIVE-LQTS Research Study Participants! If you are enrolled in the LIVE-LQTS study, we would love to hear from you and thank you for...
SADS Spotlight: Joey
Name: Joseph “Joey” ReinelAge: 4 Which SADS condition do you have? CPVTWhen were you diagnosed? Age 3 - after surviving a SCAHow are you treated?...
SADS Spotlight: Alexis
Name: Alexis Holmgren Age: 18 Which SADS condition do you have? Long QT Syndrome Type 5 When were you diagnosed? In 2013 at age 12 How are you...
LQTs, 504s, & AEDs
As a LQT patient-parent as well as an educator-advocate of students facing chronic medical conditions in a large school district, I have learned...
A Diagnosis for Annie
Annie was born in May 2005 eight weeks early, and with kidney problems and unilateral talipes (club foot). Before her first birthday,...