KnowChiari

My name is Robert “Robbie” Niessen, and I am a 17-year-old high school student living with Chiari malformation.

In May 2025, 10 seconds altered the architecture of my life. During a soccer game, I experienced a serious injury that led to months of symptoms, uncertainty, and searching for answers. As doctors worked to understand what was happening, we discovered that I had Chiari malformation.

Since then, I have been navigating the challenges that come with this condition while continuing to advocate for awareness and understanding. Unfortunately, my symptoms have not improved, and Chiari decompression surgery has become a possible next step in my journey.

That is why I started KnowChiari. My goal is to educate others, spread awareness, and support research that can help improve the lives of people affected by Chiari. This is my why.