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REGISTRATION IS OPEN!

The DASH FOR DESSH 2024, our virtual race, will take place from September 28th to October 6th. Run, walk, bike, scoot, or roll for a cause!

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DESSH is short for
DeSanto-Shinawi Syndrome.

DeSanto-Shinawi Syndrome is a rare neurodevelopmental genetic syndrome caused by a mutation or deletion in the WAC gene. DESSH is characterized by global development delay, intellectual disability, hypotonia, dysmorphic facial features, epilepsy, and ocular, gastrointestinal, and behavioral abnormalities. WAC is identified as an autism gene.

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"He is our little X-man. He will not be like the others, but we understand thanks to him that the difference is a strength."

Marco's Family - Anglet, France

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We are a patient advocacy group in support of patients and caregivers challenged by DeSanto-Shinawi Syndrome. 

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OUR STORIES

DESSH is an autosomal dominant disorder and can be passed down.

In most cases it occurs spontaneously, or
'de novo'. 

Common characteristics are delayed motor skills and speech, and hypotonia.

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