Our Mission

Crazy by Chiari is a patient-led advocacy organization focused on improving communication, education, and trust between individuals living with Chiari malformation and the medical professionals who treat them.

The organization’s name reflects a hard truth: patients with complex neurological conditions are frequently dismissed, misdiagnosed, or labeled as anxious or unstable when their symptoms defy traditional diagnostic frameworks. Many spend years navigating medical systems that minimize their experiences, often delaying appropriate care.

At the same time, Crazy by Chiari recognizes the pressures facing physicians—particularly neurosurgeons—who operate under uncertainty, bear responsibility for life-altering outcomes, and often lack safe spaces to process the emotional toll of their work.

To address this divide, Crazy by Chiari created two interview series:

• “I Have a Voice!”, which centers patient stories and lived experiences.
   
• “I’m Listening!”, which gives neurosurgeons and specialists a platform to speak openly about their work, challenges, and humanity.
   

Together, these initiatives foster mutual understanding, reduce stigma, and promote compassionate, informed care. Crazy by Chiari is building a movement that challenges outdated narratives and reshapes how complex neurological conditions are understood and treated.