After Adult Diagnosis, Lisa Bullock Becomes Hometown Advocate

By Chris Rogers  |  July 31, 2022

Lisa Bullock likes to read. When she finds a topic that interests her, she plunges into it fully, researching and learning as much as she can.

For most of her life, she has struggled with headaches. They first started to come on when she was about six years old, and as she grew, the headaches stayed with her. She had scores of brain scans done from the 1970s onward, but it wasn’t until 2009 that a doctor finally pinpointed the cause: Dandy-Walker.

Initially, the diagnosis shocked her. She had never even heard of Dandy-Walker before. So, she decided to research her newfound condition and become more knowledgeable about it.

Fast forward 13 years and Bullock, armed with a decade of research on the topic, has become a fierce Dandy-Walker advocate, both in her hometown of Monrovia, California and on social media.

“I think it’s important to bring an awareness,” she said. “There are so many diseases out there that nobody knows what they are. I just want to help people to learn about Dandy-Walker.”

Her journey isn’t free of obstacles. Dandy-Walker has caused some co-occurring conditions that make it hard for her to walk, so most days she has to use a walker or a wheelchair to get around. But that doesn’t keep her from raising awareness and spreading the word in her community. If anything, it motivates her more.

“I’m not going to stop talking about it until there is a cure or a treatment for [Dandy-Walker],” she said.


Each year, Bullock sets up a fundraiser at a restaurant in Monrovia to raise money for Dandy-Walker awareness and research. This year, she held it at Blaze Pizza and encouraged her network to come out and support the cause she is so passionate about.

But in addition to that, she had another idea: get a local big wig involved. She set up a meeting with Monrovia mayor Tom Adams, asking him to declare May as Dandy-Walker Awareness Month in the city. He immediately jumped at the opportunity, and at a city council meeting in April with Bullock in attendance, Adams issued the proclamation. 

“If I had known how easy it would be, I would’ve asked for his help years ago. I was starstruck, I even asked for his autograph,” Bullock chuckled about meeting the mayor and getting him involved.

Now, between the annual fundraisers, the city council proclamation, and Bullock’s tireless work advocating for herself and others in her community, the Dandy-Walker community has a strong voice in Monrovia.

“It pays in the long run, and it makes me feel good to raise awareness,” she said. “I’ve worked so hard and to actually get a proclamation, it gives me such a warm feeling that I’m doing something right.”

Thanks to Lisa Bullock's conversations with the Monrovia, California mayor, the city council declared May 2022 as Dandy-Walker Syndrome Awareness Month.