Crazy by Chiari is a neurosurgery advocacy organization dedicated to bridging the communication gap between neurosurgeons and patients by strengthening communication, understanding, trust, and collaboration on both sides.

We support educational and advocacy initiatives for patients and clinicians while advancing research, awareness, and education related to Chiari malformations and associated comorbidities.

Our work is built on a simple belief: meaningful progress in neurosurgery requires both voices.

Patients bring lived experience. Neurosurgeons and medical professionals bring years of education, training, research, and clinical experience. Neither perspective replaces the other. When those perspectives can meet with mutual respect, better communication and stronger partnerships become possible.

Crazy by Chiari began with Chiari malformation, but our purpose has grown into something larger.

Navigating complex neurological conditions can expose significant gaps between what patients experience and what medical professionals are able to communicate, explain, or address within an increasingly demanding healthcare system.

Those gaps can create frustration on both sides.

Patients may struggle to understand their diagnosis, treatment options, recovery, or what questions they should ask. Neurosurgeons and other clinicians may be working within limited time, complex cases, growing administrative demands, and expectations patients rarely see.

Crazy by Chiari exists in the space between those experiences.

Rather than choosing one side of the conversation, we advocate for both.

Our goal is to create opportunities for patients and clinicians to better understand one another, improve communication, expand access to meaningful education, support ethical and compassionate care, and contribute to research that advances the field.

Chiari malformation and its associated conditions remain a central focus of our research, education, and advocacy efforts and are the foundation from which Crazy by Chiari began.

Our larger mission is about something universal within neurosurgery:

Helping people hear one another when the conversation matters most.

Crazy by Chiari operates through a dual-advocacy model.

We believe supporting patients does not require working against physicians, and supporting physicians does not require diminishing patient experiences.

Progress requires both.

We work to provide patients and families with accessible education, resources, community support, and tools that can help them better understand their condition and participate meaningfully in conversations about their care.

Patient advocacy should empower people to communicate not create fear or distrust.

We advocate for the professionals caring for patients as well.

Neurosurgery demands extraordinary levels of responsibility, judgment, education, precision, and emotional endurance. Through clinician-focused advocacy, education, research, and open conversation, we seek to better understand the challenges medical professionals face and identify ways patients, organizations, institutions, and the broader community can support them.

The most important work often happens between these two perspectives.

Crazy by Chiari creates initiatives designed to strengthen that relationship through education, research, structured discussion, storytelling, and opportunities for patients and medical professionals to learn from one another.

Our advocacy is rooted in integrity, ethics, and care for patients and for the people who care for them.

Communication begins by creating space for people to speak honestly—and for others to listen.

Our signature interview series explores neurosurgery from multiple perspectives.

The clinician teaches. We listen.

I’m Listening! gives neurosurgeons, physicians, researchers, and other specialists an opportunity to educate patients and the public about their work, areas of expertise, evolving research, difficult clinical questions, and the realities of treating complex neurological conditions.

The goal is not simply to ask physicians what patients want to hear. It is to give medical professionals room to explain what they believe patients need to understand.

The patient speaks. We listen.

I Have a Voice! gives patients and families an opportunity to share their experiences in their own words.

These conversations explore diagnosis, treatment, surgery, recovery, relationships with the healthcare system, difficult moments, unexpected victories, and the lessons patients want others facing similar circumstances to know.

Every experience is different. Every experience can teach us something.

The difficult conversations happen here.

Where Voices Meet! explores the experiences of the medical professionals working within neurosurgery.

These conversations go beyond diagnoses and procedures to discuss the human realities of medicine including difficult cases, responsibility, burnout, communication challenges, expectations, professional pressures, and the emotional weight carried by those responsible for caring for others.

The questions are intentionally deeper.

Because building understanding between patients and clinicians requires hearing the parts of both experiences that are rarely discussed publicly.

Our work extends beyond awareness.

Crazy by Chiari develops and supports initiatives designed to improve education, communication, advocacy, and research within the neurosurgical community.

Our efforts include patient and clinician educational resources, research initiatives, physician collaboration, community programs, professional discussions, and projects focused on improving how complex neurological conditions are understood and communicated.

Chiari malformations and associated comorbidities remain a major area of focus as we work to expand the quality and accessibility of educational resources available to patients, families, clinicians, and researchers.

Crazy by Chiari believes meaningful advocacy requires more than speaking loudly. 

It requires listening carefully.

It requires asking difficult questions.

It requires respecting expertise while recognizing lived experience.

It requires supporting patients without vilifying clinicians and supporting clinicians without dismissing patients.

And it requires the integrity to advocate for better communication even when the conversation is complicated.

We advocate for both sides because both sides matter. 

When millimeters matter, Communication matters more.