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 Open Golf Tournament


The Dandy-Walker Alliance is excited to announce the Dandy-Walker Open golf tournament will take place next June in Maryland. All proceeds from the tournament will go toward Dandy-Walker research and awareness. Check out more details and register below!

Monday, June 3, 2024

Compass Pointe Golf Course | Pasadena, Maryland

9 a.m. Shotgun Start Tournament

Breakfast, Lunch, and Drinks Included  |  Awards and Silent Auction to Follow

Family Perspectives


Dandy-Walker Malformation can cause a wide range of conditions, and everyone’s experience with it is different. Check out the videos below to learn about Dandy-Walker from parents’ and patients’ perspectives. 

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.

Anntonette Dennis

Anntonette Dennis, our Southern Coordinator, talks about her daughter, Kerrington, facing a Dandy-Walker diagnosis after years of uncertainty.

Medical Perspectives


Learn more about Dandy-Walker from the medical professionals who treat and research it every day. 

Dr. John Myseros, MD

In our July 2023 webinar, Dr. John Myseros, MD, discusses what to expect with a Dandy-Walker diagnosis and different treatment options for hydrocephalus.

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.

Dr. Kathleen Millen, PhD

Read our June 2023 interview with Dr. Kathleen Millen, PhD, one of the world's leading Dandy-Walker and hind-brain genetic researchers.

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!

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 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.