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We believe that by making findings available to families affected in an organized and accessible way and by disseminating the direct and indirect outcomes of translational research we can more swiftly move the results from the bench to the bedside in an expeditious manner.
a fundraiser to help raise public awareness, and to promote the need for more research, regarding a birth defect known as Dandy-Walker Syndrome, also commonly known as Hydrocephalus.
Although it is one of the most common brain malformations, little is known about Dandy-Walker Syndrome and its cause(s); and to date, there is no cure. Dandy-Walker affects the Cerebellum and the fluid filled spaces around it. The Centers for Disease Control and Prevention estimate that Dandy-Walker occurs in at least 1 in 5000 infants.
Individuals with Dandy-Walker can have a wide range of symptoms, from mild (with some children having normal cognition), to severe (some children never achieving normal intellectual development). Longevity depends on the severity of the syndrome and associated malformations. The presence of multiple congenital defects may shorten the lifespan.
My niece, Autumn, was diagnosed with Dandy-Walker Syndrome at six months old. Our family noticed early on, she wasn't developing normally. She is now five years old, and although taking care of her provides many complications, she is still loved unconditionally. She is a happy little girl who enjoys life. She attends preschool five days a week, and does physical therapy. She comes home smiling every day. We do not know what the future holds for Autumn, but my hope is that by raising awareness, research will someday find a cure!
Due to the love we have for Autumn, and others effected with Dandy-Walker Syndrome, I will be hosting this event in Sparks Nevada, on May 28th, 2011.
- Harley Stephenson
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