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

Rating: 5 stars  

I first learned about the SADS Foundation after my son’s death. Before his unexpected passing last August I had never heard of sudden heart arrhythmia. One day while at work, feeling helpless, sad and angry, I goggled CVPT, one of the affiliated illnesses. Of course, there was a good amount of online information to go through. However, the SADS website was one of the few sites that stayed with me during my many weeks of research. Their site was not only easy to maneuver and had a very professional appearance; it also had a massive amount of great information, including links taking me to other reputable and related sites. I absolutely loved the innovation of their Patience & Family Support page, especially the Healing Wall. It was obvious that everything was very well thought out. The website was just a small reflection of the great services I received from the organization since my first contact. A few months ago I made one phone call and the outreach from this organization has been phenomenal. The encouragement, compassion, and support I’ve received verbally and through the actions of the foundation’s staff has been top notch. I feel as if they truly understand the difficulty me and my family are experiencing and they are there for us. I receive a thinking of you phone call or an email at least once a week. Each contact ends with words of encouragement and inspiration. I’ve also received a call from a member of their board as well as two or three other supportive parents the foundation put in contact with me. In the short period of time since I’ve been in touch with the foundation, they have created a memorial page for my son, send me results of donations directed to his page through weekly reports, and have volunteered to attend a celebration of life event I am having for my son later this summer. As a result of their support, I have also found a new and important mission while refocusing most of my grief: working on a way to honor my son by getting out the word regarding SADS as well as this great organization. I know I would have eventually found a way to work through my grief. However, I could not have re-focused this level of organized and positive energy to such a wonderful cause if it were not for the support of this organization and its staff.

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Role:  Client Served & I am organizing a celebration of life event in honor of my son.