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

Rating: 5 stars  

Our daughter Alexis was diagnosed with Dravet Syndrome in 2006. Until the Dravet Syndrome Foundation was formed there was no organization funding and directing research. The parents that formed DSF changed our lives. They gave us hope and a new purpose. We could continue to feel hopeless, or we could join their mission and help to change the future for our children. We have been fundraising for DSF for the past 3 years and it has brought so much optimism to our lives. We have great hope for Alexis, and all those that suffer with Dravet Syndrome. They have helped us feel part of a community that supports and cares for each other. The accomplishments of DSF are truely staggering. They have made enormous strides in funding and shaping the research, in increasing awareness, providing a support network for families and caregivers, and by supporting families in need with financial assistance. Hope gives us the strength to continue fighting this devastating seizure disorder.

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Very Well

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Role:  Volunteer