GALT, CA (MPG) - In an annual effort to raise awareness and research funds for a brain disorder, about 200 community members dressed in purple on Sept. 28 for Conquer Chiari Walk Across America.

The walk at Galt Community Park was the ninth in the Sacramento area and the fourth in Galt. The organizer, who is preparing to hand over the reins, said she has seen the benefits of the group’s advocacy in her own life.

For the walk, teams, often composed of people with Chiari and their loved ones, made their way around the perimeter of the park, greeted by small signs with phrases such as “Conquer Chiari.” There was also a raffle and plenty of time for socializing.

Participants wrote messages on a large purple “ribbon” made of particle board. Ribbons from the previous years were propped up around the picnic area.

Chiari malformation (pronounced kee-AHR-ee) is a neurological condition that is caused by the cerebellum, the lower back part of the brain, pushing through the opening at the skull’s base. This can disrupt the cerebellum and other parts of the nervous system and spine.

Chiari malformation has a wide variety of symptoms, according to the website of the national Conquer Chiari organization. 

Signs range from headache and balance problems to sleep apnea and vision problems.

Conquer Chiari’s mission is to provide information on Chiari malformation for patients, raise awareness among the public and medical professionals, and sponsor research into the disease.

The organization reported it awarded $4.7 million in research grants between 2004 and 2023. As of March 2024, the grant program has reportedly funded 89 peer-reviewed publications on subjects such as the effects and causes of Chiari malformation.

Organizer Sunny Gilstrap became active in Chiari advocacy after her daughter was diagnosed with the condition at 9 months old. Gilstrap told the Herald that it has sometimes been hard to get proper care and the recognition of health care providers.

“Over the years, it’s been difficult to diagnose Chiari,” Gilstrap said, noting that an MRI is needed to identify it. “A lot of doctors weren’t very aware of it. I had a few that didn’t know how to pronounce ‘Chiari,’ which can be difficult when you’re asking them for guidance for your child.”

Chiari malformation might be more prevalent than previously thought, Gilstrap added, because of the difficulty of diagnosis. 

“It’s important because, like with my daughter, we thought she was just fine. And we had one of her annual MRIs and she had to go in for surgery, because she was not doing OK,” Gilstrap recalled.

Speaking to the attendees before the walk, Gilstrap announced that she would step back from organizing. She was optimistic that the walk would continue next year with new hosts.

“We’ve been walking for 11 years and hosting for nine, and … I want to walk again,” Gilstrap said in an interview. “So I want to go out there and have fun with my kids and watch somebody else. And I think some new ideas would be nice. See what other people can do.”

She leaves her leadership position having watched the situation for Chiari malformation patients improve as others learn about the disease. She told participants that their support has made noticeable changes.

“I feel like now, you guys have made a difference and it’s so much better. People are being diagnosed a lot faster. The use of MRI is being more consistent. … It’s really helping with the diagnostic rates,” Gilstrap said. “Thank you. You guys did that. You made a huge, huge difference.”