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Billy "Joey" Rowe

Founder & President

Hello, I am married with two kids. I am originally from Maryland but now live in Charlotte, NC. I was frequently sick as a child but no one was able to determine the cause. Finally in 2001 my family doctor diagnosed me with Chiari Malformation. At that time I began seeing a Chiari specialist. They tried many methods to alleviate my symptoms, but none were successful. I had decompression surgery in October 2005. Following this surgery I had some improvement, but continued to have headaches, balance issues, and leg pain.

After additional visits with my Chiari doctor, they determined that I also had Tethered Cord Syndrome. In an effort to alleviate my leg pain I had Tethered Cord surgery in August of 2006. Unfortunately, the leg pain has remained. However, I can say that overall, after the surgeries, my symptoms have stabilized and I had some improvement.

In July 2015, I had a cervical fusion to further alleviate symptoms associated with Craniocervical Instability (CCI). It has helped somewhat but I still have numerous problems that will never go away. So, running Chiari Fund can be hard at times. I do have the ability to do what I can, and when I can do it, so that helps me do my job better.

I am so proud to have the opportunity to serve the Chiari community. The vision of the organization came from my own experiences with having Chiari, Craniocervical Instability and Tethered Cord. I have seen first-hand how many people need help in obtaining the appropriate care they deserve. Money should never be an obstacle for anyone to receive the best care and see the best doctor to take care of their condition. I saw this as a void in the community and thereby Chiari Fund was born.

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