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Feb 28th is Rare Disease Day!

Dandy-Walker is just one of many rare diseases that doesn’t get enough attention or research funding. Click on the logo to the left and see how DW families are part of a much larger group that are affected by various rare conditions. As their motto states,“Alone we are Rare, Together we are Strong!”

 Unlikely genetic suspect implicated in common brain defect

August 9, 2009

A genetic search that wound its way from patients to mouse models and back to patients has uncovered an unlikely gene critically involved in a common birth defect which causes mental retardation, motor delays and sometimes autism, providing a new mechanism and potentially improving treatment for the disorder.

Researchers from the University of Chicago, University of Alberta and other institutions announce in the September issue of Nature Genetics–available online August 10–that the FOXC1 gene contributes to Dandy-Walker malformation (DWM), a brain defect that occurs in 1 of every 5,000 births.

Read the entire article at the link below

University of Chicago Press Release

Have you thought of doing a Dandy-Walker Alliance Walk/Run Fundraiser in your area but had no idea how to go about it? We’ve made it a little easier by putting together a guide to walk you through the process. Click here for more info!

We are the faces of Dandy-Walker

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.

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.

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. 

Click below to visit us on the following networks 

Dandy-Walker Alliance
                                        

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