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Review for Dravet Syndrome Foundation, Inc., West Haven, CT, USA

Rating: 5 stars  

I have been raising a child with Dravet syndrome for the past 8 years. In my quest to find other parents like myself, I had the pleasure of meeting and becoming close friends with two of the people who ultimately started the Dravet Syndrome Foundation. I have volunteered for the foundation whenever I could since its inception because I believe in what they are trying to accomplish. It was very exciting to know that there was now an organization that was setting out to do research for our children. Dravet syndrome is a catastrophic disease that ultimately changes every aspect of the afflicted child as well as their families' lives. The Dravet Syndrome Foundation has not only set out to do research in hopes of finding a treatment, or a cure, to help us, but they also provide assistance for families in need of medical equipment or other devices that can help make their lives just a little bit easier. In my case, my son has severe OCD as a symptom and cannot be left by himself unsupervised at any time. This made it very difficult to get anything done around my home, such as clean, cook, or help my other son with his homework. The Dravet Syndrome Foundation provided me with closed circuit cameras for my house and I cannot put into words the difference this made in my life. Now I can function around my home without compromising my son's safety. What the Dravet Syndrome Foundation has accomplished in such a short time definitely speaks for the hard work and dedication of its Board of Directors. If a treatment is to be found for this horrific disease, I have no doubt the Dravet Syndrome Foundation will be involved somehow.

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Role:  Volunteer