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

We are an all-inclusive organization comprised of individuals directly and indirectly affected by Dandy-Walker sharing a collective interest in educational, informational activities and supporting non-partisan research to increase public awareness of the congenital birth defect Dandy-Walker. We also support all efforts to determine the cause(s), find the cure and to ameliorate the effects of Dandy-Walker. 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.

When was the Dandy-Walker Alliance founded?

 

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 keeps the Dandy-Walker Alliance running?

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 submission@dandy-walker.org or call 301-919-2653 if you would like to help, would like to share information or have an idea for those we collectively serve.