May is Dandy-Walker Awareness Month! Help us raise awareness all month long by getting involved in one of the ways listed below. 

Get Your State on the Map

Our goal is for every state (plus cities and towns across the U.S.) to recognize May as Dandy-Walker Awareness Month annually. You can help the cause by sending letters to your governor and and local officials requesting a proclamation. 

Download our template here, fill in your state’s information, and mail it to your governor! Alternatively, email us at and we’ll send you a pre-filled letter for you to send out!

Join our Awareness 5K From Anywhere

We’re excited to bring back our Dandy-Walker Awareness Virtual 5K this year. This walk/run is open to all and can be done at your own speed, wherever and whenever you want within the month of May.

Register here to make your impact today! All $15 of your registration fee will go toward raising awareness worldwide and funding research into the genetics of Dandy-Walker. 

Our Northeast Coordinator, Krystal Lacey, is organizing an in-person component of this 5K in May (location and date TBD). For those in the Connecticut area who want to get involved, email her at

Share Your Story

Our Dandy-Walker community is full of so many wonderful individuals with unique experiences and stories.

It is our goal to share as many of these stories with the public to help those outside of our community better understand what it means to live with Dandy-Walker, and to reassure those in our community that they are not alone. 

If you want to be featured in our newsletter or on our YouTube channel, email us at to set up an interview! 

Make a Donation

The Dandy-Walker Alliance is the only 501(c)(3) nonprofit organization dedicated to supporting families affected by Dandy-Walker, raising awareness, and funding research into the malformation’s causes. Help us continue to make an impact around the world by donating here

Hear Our Stories

Each Dandy-Walker journey is unique. Listen to some of our families as they share their stories.