SADS girlI think I mentioned that heart disease is a very personal cause because it has affected my family for decades. Did I ever mention that my Dad has “died” more than a few times? Well, he has and his last episode was caused by SADS. Thankfully, he is one of the rare lucky survivors due to a defibrillator close by.

A horrible sounding name,  that conjures up unpleasant thoughts. So what is SADS? It is an acronym for  Sudden arrhythmia death syndromes. (SADS) are genetic heart conditions that can cause sudden death in young, apparently healthy people and takes approximately 4,000 young lives annually  These conditions can be treated and deaths can be prevented.

In case your interested here are the warning signs: family history of unexpected, unexplained sudden death under age 40; fainting or seizure during exercise, excitement or startle; consistent or unusual chest pain &/or shortness of breath during exercise. My Dad was on a spin bike when his heart stopped almost 2 years ago.

Until then, I had no idea that since the early 1970’s a doctor named Michael Vincent, in Salt Lake City, Utah was trying to solve this mystery of the heart which takes so many lives.  He began studying the long QT syndrome (LQTS) which is what triggers SADS (don’t dr.s just love acronyms?)

Dr. Vincent and his research team were frustrated by the number of young people with this syndrome who were undiagnosed  and at risk for dying of this disorder. It seemed that doctors were simply not aware of the problem or the ability to test for it.


So in 1988, Dr. Vincent approached his genetics colleagues, and asked if they would be interested in attempting to find the genetic abnormality that leads to SADS. By early 1991, they had located the LQTS gene on chromosome 11.

On December 12, 1991 Dr. Vincent and colleagues established  the SADS foundation a non-profit with the purpose of helping to prevent sudden and unexpected cardiac death in children and in young adults.

Today over twenty years later, their amazing work continues to inform and save lives and there is simply nothing sad about that.

Charity Matters.

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