May is Dandy-Walker Awareness Month!

This year, we are hosting a virtual 5K to honor Dandy-Walker Awareness Month nationwide. Proceeds help us connect families and provide a support system for those with Dandy-Walker Syndrome, and fund research into the genomic mutations associated with Dandy-Walker.

This event is all virtual, meaning you can participate from anywhere on your own time – just pledge to walk or run 3.1 miles sometime during the month of May. Sign up using the green button below and remember to send us your favorite pictures from your outing!

A virtual 5K isn’t your style? Or you want to do more in addition to the event? 

Here are FOUR more ways you can support the Dandy-Walker Alliance both this month and beyond!

1. Host a Fundraiser


The Dandy-Walker Alliance raises money to fund neurodevelopmental genetics research led by Dr. Kimberly Aldinger at the Seattle Children’s Hospital. Dr. Aldinger’s research focuses on brain malformation gene discovery to the noncoding genome. With your help, we can fund this research which comprehensively searches the genome for mutations associated with Dandy-Walker Syndrome.

In addition to our virtual 5K, you can support this research by hosting your own Dandy-Walker Alliance fundraiser! Organize an event locally – a walk/run, bake sale, car wash, restaurant fundraiser, etc. – and we’ll set up a personalized donation/sign up page for your event and supply you with t-shirts, wristbands, and promotional materials.

Email to set up a fundraiser today!

2. Support Us Through Amazon and Facebook


You can support the Dandy-Walker Alliance and fund research with every eligible purchase on Amazon or share a virtual fundraiser with your Facebook community.

Visit, log in to your Amazon account, select the Dandy-Walker Alliance, Inc. as your charity of choice, and start shopping. Each time you check out at, 0.5% of your purchase will go to the Dandy-Walker Alliance!

Or, you can host a Facebook fundraiser to send to your own network without leaving the comfort of your own home. Click here to visit our Dandy-Walker Alliance Facebook page and click “Raise Money” to set up your own virtual fundraiser!

3. Designate May as Dandy-Walker Awareness Month in Your Hometown

This year, hundreds of thousands of people across the United States will observe the 16th Dandy-Walker Syndrome and Hydrocephalus Awareness Month. Help this month be recognized in your region with a letter to your city, county or state officials requesting a proclamation.

You can email for a customized form letter for your jurisdiction.


4. Share Your Stories


Starting in May, we are going to share Dandy-Walker accomplishments on our website and social media channels, and in our new email newsletter (sign up here!). We want to hear your stories and updates throughout Dandy-Walker Awareness Month and beyond. If you or your loved one have had a recent accomplishment – birthday, job update, first steps, etc. – and you want to be featured, let us know!

Get in touch with to have your stories included!