Dandy-Walker Alliance

One in 10,000 children is born with Dandy-Walker Malformation, a congenital brain malformation involving the cerebellum and the fluid-filled spaces around it. Dandy-Walker is often associated with other conditions such as hydrocephalus, seizures, mobility issues, developmental delays, other central nervous system disorders, and more. 

The Dandy-Walker Alliance is dedicated to serving and supporting everyone affected by Dandy-Walker. Use the menu below to learn more about our work. 

Dandy-Walker Awareness Month

May is Dandy-Walker Awareness Month, and we have so many ways to get involved and raise awareness in your community!

Get Involved

Register for Our Virtual 5K!

Take steps for Dandy-Walker Awareness and sign up for our Virtual 5K. You can complete this walk/run on your own time wherever you want, and all the money raised will go toward raising awareness and funding research.

Get Your State on the Map!

Our 50 State Initiative aims to have every state in the U.S. declare the month of May as Dandy-Walker and Hydrocephalus Awareness Month. Learn more about how to get this declared in your state, or at the local level in your city, town, or county.

Make a Donation!

The majority of our revenue is from private and individual donations. Help us continue to support families and fund research by donating today.

Learn About Dandy-Walker


Dandy-Walker Malformation can cause a wide range of conditions, and everyone’s experience with it is different. Check out the videos below to hear about Dandy-Walker from three different perspectives: researcher, parent, and patient. 

Dr. Kimberly Aldinger, PhD

In our March 2023 webinar, Dr. Kimberly Aldinger, PhD, explains the cerebellar anatomy of Dandy-Walker and elaborates on her research into its genetic causes.

Krystal Lacey

Krystal Lacey, our Northeast Coordinator, talks about her son, Declan, and the journey of raising a child with Dandy-Walker.

Nick Nguyen

Born with hydrocephalus and Dandy-Walker, Nick Nguyen shares his story of growing up with these conditions and how they shaped his career and passions.

Dandy-Walker Merchandise


We’re excited to release our new Dandy-Walker Alliance t-shirts! 

Choose from two new designs and four different color schemes as you represent the Dandy-Walker community. Order yours now while supplies last!

What's New?


Check out our recent newsletters to catch up on the latest Dandy-Walker Alliance news and updates!

February 2023

Collaboration with Bionaut Labs


New Treatments

The Dandy-Walker Alliance is collaborating with Bionaut Labs to educate our constituency about an investigational new treatment for obstructive hydrocephalus associated with Dandy-Walker Malformation. Bionaut Labs is looking for patients who meet the criteria and are willing to share their MRIs for the purpose of training the Bionaut devices. Click the links below to learn more and get involved!

Stay In Touch


Join our Facebook groups, sign up for our email newsletter, follow us on social media, and reach out to our staff!

Dandy-Walker Facebook Group

Our Dandy-Walker Parents Facebook Group isn't just for parents – anyone affected by Dandy-Walker can join to discuss their experiences and ask for advice.

Email Newsletter

Sign up for our monthly newsletter to receive regular Dandy-Walker Alliance updates and more,

Connect with Our Staff

The Dandy-Walker Alliance is here to answer any questions you have. Click below to see our staff members and reach out individually for a one-on-one conversation.