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Does your state have a

Dandy-Walker Syndrome and Hydrocephalus

Awareness Month?

Use this template to ask your governor, mayor and local politicians for a proclamation to declare a Dandy-Walker Syndrome and Hydrocephalus Awareness Month.  Send us a note or call 1-877-Dandy-Walker so we know what states have requests in.  Forward a picture of your family with the proclamation when it arrives and we’ll post it on-line! Click here for the status of your state and to see the pictures we’ve gotten so far!


Please consider making a tax deductible donation with our secure online credit card form by clicking on the “Donate Now” button below. 

Dandy-Walker Cherry Blossoms Billboard Layout 

Dandy-Walker Alliance



We are the faces of Dandy-Walker

Who is the Dandy-Walker Alliance and what is the purpose?

The Dandy-Walker Alliance, Inc. is a non-profit corporation committed to educational and informational activities, programs and publications and supporting non-partisan research and events to increase public awareness for Dandy-Walker Syndrome.  We support all efforts to determine the cause(s) of, find the cure for and to ameliorate the effects of Dandy-Walker Syndrome.

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.

Our founding

We were founded in January 2007 in Kensington, Maryland, USA by a family whose son has Dandy-Walker after learning that there was no active 501(c)(3) organization for those we are collectively seeking to help. The Dandy-Walker Alliance owes much of its success to the Dandy-Walker Syndrome Network and other pioneers that came before us.

This website is an effort to pull together a compilation of reliable and medically accurate resources that have been gathered over the years. You can help by sharing any information you have that is not presently visible on this site. We will do all we can to make it available given the constraints of copyrights or other rights that may be retained by the author(s).

This organization is in no way intended to compete with any of the other Dandy-Walker websites that exist. We will be happy to post these site’s URLs if the owners will contact us and give their permission. We do not and will not pass judgment on anyone or anything.

Who operates the DWA?


The Dandy-Walker Alliance is a labor of love. We do not have staff that is compensated for their time or efforts. We are all volunteers who are paid in hugs, smiles, handshakes and “thank yous”. E-mail comments@dandy-walker.org or call 1-877-Dandy-Walker if you would like to help, would like to share information or have an idea for those we collectively serve.

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Parenting Special Needs is a online magazine that is free to subscribe to. Its full of great information and resources!!