A simple walk for a huge cause

On May 17,2014, there will be a Walk/Run fundraiser in the Cleveland, OH area to raise public awareness and promote the need for more research of a birth defect known as Dandy-Walker Syndrome and a commonly associated condition called hydrocephalus.

Dandy-Walk involves an area at the back of the brain called 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. Although it is one of the most common brain malformation, still little is known about Dandy-Walker and it cause(s): today there is no cure.

Individuals with Dandy-Walker can have a wide range of manifestations from quite mild with some children having normal cognition and others never achieving normal intellectual development. Longevity depends on the severity of the syndrome and associated malformations. The presence of multiple congenital defects may shorten life span.

 Four years ago, Eric and Andrea Cole were blessed with a son, Ryan, born with Dandy-Walker; he soon developed hydrocephalus. After learning that no advocacy organization existed for the Dandy-Walker Community, the Cole's united with other families and established the Dandy-Walker Alliance, Inc. as a 501(c) non-profit public charity dedicated to providing educational and informational activities, supporting research and organizing events to increase public awareness for Dandy-Walker. Today, the Dandy-Walker Alliance disseminates information in 41 languages to 73 countries around the globe for free. You can learn more about Dandy-Walker and the Alliance by vising the website at www.dandy-walker.org.