Dandy-Walker Stories

We want to shine a light on the lives, stories and accomplishments of those around the world with Dandy-Walker. 

Do you want to have your story featured on the Dandy-Walker Alliance website? Reach out to chris.rogers@dandy-walker.org today.

Daily Dose of DJ: A Mother and Son's Journey

DJ Satter was born with Dandy-Walker and several other co-occuring conditions. His mom, Kelly, has become a dedicated caregiver and fierce advocate for her son, using social media to help raise awareness about his journey with Dandy-Walker. 

Eighty Surgeries Later, Jeffrey Smart is Thriving

Born with Dandy-Walker and hydrocephalus, Jeffrey Smart has been in and out of the hospital all his life. Now married with four kids, he's a symbol of perseverance. “I’ve got a family. I’ve got a house. I’ve got everything a guy can want. Especially for someone who has had 80 surgeries."

Bill Goodman: Musician, History Buff, Friend to All

The nephew of Pete Seeger, Bill Goodman is an avid musician and humanitarian. He hasn't let an adult Dandy-Walker diagnosis get in his way of impacting the community in a positive way. 

After Adult Diagnosis, Lisa Bullock Becomes Hometown Advocate

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. 

Paula Muller Raises $15,000 for Dandy-Walker Through New York Half Marathon

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 was diagnosed with Dandy-Walker Variant 14 years ago.

Scientific and Advisory Board Spotlight

The Dandy-Walker Alliance is supported by the wonderful physicians, scientists, and researchers on our Scientific and Medical Advisory Board. Each month, we are highlighting one of them in our newsletter and on our website here. 

Dr. Seth Norrholm, Ph.D.

Behavioral Neuroscientist | United States Air Force Academy | Colorado Springs, CO

Dr. Kathleen Millen, Ph.D.

Professor of Pediatrics, University of Washington  |  Associate Director, Center for Integrated Brain Research, Seattle Children's Research Institute  |  Seattle, WA