About Us

The Dandy-Walker Alliance’s mission is to support all efforts to determine the cause(s) of, find the cure for and to ameliorate the effects of Dandy-Walker Malformation.

What is Dandy-Walker?

Dandy-Walker Malformation is a congenital brain malformation involving the cerebellum (an area at the back of the brain that controls movement) and the fluid filled spaces around it.

The key features of Dandy-Walker are an enlargement of the fourth ventricle (a small channel that allows fluid to flow freely between the upper and lower areas of the brain and spinal cord), a partial or complete absence of the cerebellar vermis (the area between the two cerebellar hemispheres), and cyst formation near the internal base of the skull. An increase in the size of the fluid spaces surrounding the brain as well as an increase in pressure may also be present.

The malformation can appear dramatically or develop unnoticed. Symptoms, which often occur in early infancy, include slow motor development and progressive enlargement of the skull. In older children, symptoms of increased intracranial pressure such as irritability, vomiting, and convulsions, and signs of cerebellar dysfunction such as unsteadiness, lack of muscle coordination, or jerky movements of the eyes may occur.

Other symptoms include increased head circumference, bulging at the back of the skull, problems with the nerves that control the eyes, face and neck, and abnormal breathing patterns. Dandy-Walker Syndrome is frequently associated with disorders of other areas of the central nervous system including absence of the corpus callosum and malformations of the heart, face, limbs, fingers and toes.

You can learn more about Dandy-Walker here at our FAQs page

How does the Dandy-Walker Alliance help?

The Dandy-Walker Alliance is here to support those who have Dandy-Walker and their families. 

We connect families worldwide so that nobody diagnosed with Dandy-Walker feels alone. We raise awareness, help educate families, and provide resources for them to learn more about Dandy-Walker and pave a path forward. We help fund research to understand the genetic causes of Dandy-Walker. 

How can I get involved?

You can be part of the Dandy-Walker Alliance today! Help us spread awareness by following us on social media and sharing our posts, by hosting fundraisers in your hometown, by sharing your stories, and so much more.

Donate to the Dandy-Walker Alliance and help us fund genetic research!

Follow us on Facebook, Twitter, Instagram, and LinkedIn, and sign up for our email and contact list for more updates.