Simon's Fund, an American non-profit that highlights the dangers of Sudden Cardiac death in children, has invested approx $200,000 to build the first national registry for adolescent hearts. HeartBytes will collect data and imaging at screenings of students and young athletes nationwide and make it available for research.
Simon's Fund was started nine years ago when Darren Sudman and his wife, Phyllis, who live in Plymouth Meeting, Pennsylvania, United States lost their 6-week-old son to sudden cardiac arrest. The likely cause was Long QT syndrome, an undiagnosed heart rhythm disorder that causes chaotic, accelerated heartbeats.
It is unclear whether an electrocardiogram could have saved Simon's life, but the search for what killed him lead to the discovery that Phyllis had the genetic anomaly and probably passed it on to her son.
The couple emerged from their grief and after considerable research were convinced that ECGs are the most effective way to screen for conditions that can lead to SCA and death in children.
Over the years, Simon's Fund has sponsored screenings - including ECGs and heart ultrasounds when other findings suggest a need for 10,000 students in and around Philadelphia. About 100 heart problems have been uncovered. All of those records are now in the fledgling computer registry, funded so far by donations.
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