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Review for SADS (Sudden Arrhythmia Death Syndromes) Foundation, Salt Lake City, UT, USA

Rating: 5 stars  

We lost our son (age 15) to Long QT in the summer of 1991, before the SADS Foundation was formally started. Shortly thereafter, our other two children were also diagnosed with Long QT. At that time Dr Vincent, was working tirelessly to make sense of the unexplained deaths that were occurring in young people. Blood samples were sent to Dr Vincent to be added to his research. It was Dr Vincent who talked with us and gave us comfort that we would find the underlying reason for this condition. Here we are 19 years later. Answers and good treatment modalities are here. I have supported the SADS Foundation from the beginning; I have seen it grow from a vision to a reality. SADS works everyday to give support to families and to educate medical providers at all levels. SADS is a presence at most, if not all, major Cardiology meeting. SADS continues to work with other specialties, e.g medical examiners, to get the word out about the possibility of this underlying cardiac condition as the cause of unexplained deaths in children and young people and young adults. The work SADS does has saved the lives of many sibling and other family members.

I've personally experienced the results of this organization in...

See review.

What I've enjoyed the most about my experience with this nonprofit is...

the true sense that they are a part of your own family; that they are there to support you in any way you need them.

The kinds of staff and volunteers that I met were...

committed and concerned even though none of them have experienced a loss to SADS related conditions.

If this organization had 10 million bucks, it could...

decreased the number of unnecessary deaths caused by underlying SADS conditions. Most people with SADS conditions have warning signs. We need to educate more heathcare providers to these warning signs and how to diagnose SADS conditions correctly.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

Role:  Client Served & Supported the SADS Foundation from its early days.