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What is Dandy-Walker?

One in 10,000 children is born with Dandy-Walker Syndrome, 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.

Finding out you or your child has Dandy-Walker is a trying time for individuals and families. Fortunately the Dandy Walker Alliance is here to help.

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. 

 

For Researchers

The Dandy-Walker Alliance is here to assist researchers with patient recruitment and grant funding for all Dandy-Walker related research. If your research team is focusing on Dandy-Walker or the hind brain in general, get in touch with us today.

For Families

The Dandy-Walker Alliance was founded with the mission of supporting individuals with Dandy-Walker and their families. We are dedicated to providing this support to families around the world through up-to-date information, networking, research, and more.

Join Us

Change the life of a child

Your support enables us to raise awareness, provide support to individuals and families affected by Dandy-Walker, and fund important research into the genetic causes of Dandy-Walker as we try to find better treatments. 

Give us a hand

Explore Causes

The Dandy-Walker Alliance relies on volunteer support from members of our community. A few of the ways you can get involved are:

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Get Your City or 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.
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Plan a Fundraiser

Want to support families around the world, spread awareness, and fund research into the genetic causes of Dandy-Walker? We’ll help you figure out the best event for your style and resources and build you a personalized fundraising page that you can send out to all of your friends and family!
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Consider making a financial donation

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

Our Causes

Our Achievements

We provide vital
help to people

We have ensured that our finances are completely transparent and have earned Silver status on Candid's  Guidestar website.

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Our Stories

Paula Muller Raises $15,000 in NYC Half Marathon in honor of son, Andrew

Paula Muller has 20 half marathons and six marathons under her belt. But this March, completing the New York City Half Marathon meant more to her than usual. She had decided to run the race for a cause, raising more than $15,000 for the Dandy-Walker Alliance in honor of her son, Andrew, who has Dandy-Walker Variant.

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Lisa Bullock Leads Advocacy Charge in Hometown

Lisa Bullock was diagnosed with Dandy-Walker in her 40s. Now, armed with a decade of research, she works tirelessly to raise awareness in her hometown of Monrovia, California. This year, she worked with the mayor to declare May as Dandy-Walker Syndrome Awareness Month citywide.

Bill Goodman, the nephew of folk icon Pete Seeger and a passionate musician and humanitarian in his own right, was diagnosed with Dandy-Walker in his 50s. Photo courtesy of Film It Productions.

Bill Goodman Unites Through Music

Bill Goodman was diagnosed with Dandy-Walker at 56, but that hasn't stopped him. An avid musician and the nephew of singer-songwriter Pete Seeger, he uses music to bring people together in his Chicago community.