Crazy by Chiari

05/23/2026

The wait is over—the full episode is officially LIVE! 🎥✨

What happens when a complex neurological diagnosis feels overwhelming, but the right expertise—and a true advocate—is just around the corner?

In this special release of the "I'm Listening!" interview series, we sit down with one of the most dedicated and leading voices in pediatric neurosurgery to talk about his work with Chiari Malformation.

We are incredibly honored to be joined by Elias Rizk MSc MBA MD PhD, Chief of Pediatric Neurosurgery and Co-Chief of Pediatric Neurosciences at Dell Children's Medical Center.

Dr. Rizk brings a rare and powerful combination of profound technical expertise and a deeply compassionate, human approach to treating some of the most intricate conditions affecting children today. In this episode, we dive deep into what it truly means to bridge the gap between high-level clinical excellence and patient-centered community care.

Whether you are a healthcare professional, a patient advocate, or a family navigating these challenging paths, this conversation offers vital clarity, insight, and hope.

👇 Watch/Listen to the full episode here: https://youtu.be/F2DIdeWeVwg

What happens when the diagnosis feels overwhelming, but the right e...

05/18/2026

Such a great time!

05/18/2026

We had a wonderful time helping with the walk this weekend! Thank you to Haley for all her hard work putting the event together!

A great event for the and community!

Thank you to our own for helping take some beautiful photos of the event!

05/13/2026

A year in the making, and we are nearing the finish line.

We are excited to share a preview of our adult base anatomy the foundation for our upcoming classification illustration set, "The Chiari Atlas."

This project has been a labor of love and precision, developed in collaboration with chiari specialists internationally. It is designed to bridge communication gaps through high-fidelity and visual .

Our Mission: While we recognize that certain classifications within the Chiari spectrum remain a subject of clinical debate, the reality is that patients are being diagnosed with these variants every day. Our goal is to provide an accurate, high-fidelity depiction of these diagnoses to ensure no patient or provider is left without a clear visual reference.

By prioritizing , this atlas serves as a vital tool for , ensuring that complex diagnoses are clear for everyone involved in the care journey. The completed set will provide a comprehensive look at both adult and pediatric classifications, serving as a robust addition to and :

Adult: 0, 0.5, 1+ (w/ and w/o syrinx), 1.5, and 2 + myelomeningocele.
Pediatric: 0, 0.5, 1, 1.5, 2 + myelomeningocele, 3, and 4.

Stay tuned as we finalize this resource for the clinical and patient community.

05/06/2026

Eye-Related Symptoms

PDF Version: https://www.conquerchiari.org/library/index/click/884

03/27/2026

At Crazy by Chiari, we believe the "white coat barrier" is an illusion we can choose to look past.

We often talk about "The Medical System" as a faceless machine. In reality, that machine is made of individuals—people who chose their careers because they genuinely wanted to help others.
On the other side are patients—the leading experts in their own lived experiences.

When we strip away the titles and the clinical settings, we find a shared mission. We aren't two separate groups navigating a system; we are a collective of people trying to solve complex human puzzles together.
The goal at CBC is simple: To foster a culture where doctors and patients are teammates. When we stop seeing a divide and start seeing a partnership, the journey becomes a lot less lonely for everyone involved.
There is no them or us... Only US. After all, we’re all in this together.

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03/20/2026

03/16/2026

From a "Crazy" Idea to a Community Reality:
✨We Are Officially a 501(c)(3)! ✨

In September 2024, CBC started with a simple, heartfelt goal: to ensure every patient had a voice. What began as a mission to empower individuals has grown into a beautiful partnership between patients and the clinical community.

Today, I am so incredibly moved to share that CBC is officially a federally recognized 501(c)(3) tax-exempt non-profit!

This journey has always been about closing the gap. It’s about creating a space where clinicians and patients work side-by-side to advance research and advocacy for Chiari and its many associated comorbidities. This new chapter as a non-profit means we can do even more to:

Support the Journey: Keep our patient resources accessible and community-focused.

Build Bridges: Deepen our collaboration with the neurosurgeons and specialists who are dedicated to better outcomes.

Fuel Research: Open new doors for funding that directly impacts the science of Chiari.

To every doctor who listened, every patient who shared their story, and every friend who cheered us on since those first days in 2024—thank you. You are what has made this possible.

We are so excited to continue this work with you. The future of advocacy is bright, and we’re just getting started!