Project Volunteers

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Founder

I was diagnosed with Chiari Malformation Type 1 in Sept of 2022. Decompressed Nov 2022. As well as having a decompression "Reversal" and Pseudomeningocele repair in Dec 2024. I found that there is a huge need to spread awareness and provide a place to share our stories both for support and Advocacy.

There is so little information distributed to the world about this condition. While there is info it can be difficult to find and even understand. Even more so there are so little specialists in general that most of us with chiari end up going to a neurosurgeon who doesn't understand the complexities of the condition resulting in failed surgeries like my own and so many others.

My hope with the project is to show the stories both of the people with the condition and the people who are working diligently to find a way to help. Such as specialists, neurologists and researcher.  At the end of the day Our Time and Our Health are the most expensive currency we will ever have. I'm choosing to spend mine on this community because at the end of the day we all have a story and this project is bigger than just mine.