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.
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 Syndrome.
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!
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.
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.
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.
Share On
The Dandy-Walker Alliance relies on volunteer support from members of our community. A few of the ways you can get involved are:
We have ensured that our finances are completely transparent and have earned Silver status on Candid's Guidestar website.
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.
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 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.
Dandy-Walker Alliance, Inc.
10325 Kensington Pkwy Suite 384
Kensington, Maryland 20895
1-877-Dandy-Walker (1-877-326-3992)
The Dandy-Walker Alliance, Inc. is a 501(c)(3) tax-exempt public charity registered in the State of Maryland.
