" 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, Cranio Cervical 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."

All About Chiari Fund


Volunteering is what Chiari Fund is all about. No one that is on the board or affiliated with Chiari Fund in any manner, receives no compensation. We all do this because it has become a part of our life and we have answered our calling.

Chiari Fund is a nonprofit organization and shall operate exclusively for charitable purposes Chiari Fund’s purpose is to provide financial assistance for people with Arnold Chiari Malformation and related disorders.

Based upon need and availability of funds, we provide direct financial assistance to those affected by a rare brain disorder called Arnold Chiari Malformation. We will also provide financial assistance for those affected by related disorders of, but not limited to, Syringomyelia (SM), Craniocervical Instability (CCI), Ehlers Danlos Syndrome (EDS), and Tethered Cord (TCS). Our means of fundraising are, but not limited to, direct donations, fundraising, and grants.

Our means of financial assistance are helping those in need seek medical attention by paying doctor bills, hospital bills, and other medical related bills. We will also provide assistance by helping individuals with travel to and from doctors and/or hospitals. Furthermore, those that are in need of assistance in paying for electricity, water, gas, etc. will receive direct aid. These programs are implemented regardless of race, color, gender, national origin, age, religion, creed, disability, veteran's status, sexual orientation, gender identity or gender expression. All board members and anyone else that is associated with Chiari Fund receive no compensation. Our goal is that 90% + is given directly to those in need.

All of these programs come at a huge cost therefore fundraising and donations are an integral part of what Chiari Fund does. With the necessary needs to help the Chiari community, it is our hope that all of those that need doctor care can receive it. In turn, the Chiari community is better off as a whole. Although Chiari Fund only puts a band aid on a huge problem, it is a start.

Billy "Joey" Rowe

Our founder

Foundation History

2013 - Concept was developed and implementation was started by creating By-Laws, Mission, Registration, and other necessary documents necessary to get Chiari Fund started.

First Of 2014- First website was launched.

2014 - Our fundraising efforts helped us provide financial aid to 3 families. One of those families did not have a bed and we bought them one.

Late 2014- Due to health of our Founder and President, Joey Rowe, Chiari Fund was put on hold. Some ongoing fundraising did continue to occur.

2015 - This website was a new start for Chiari Fund. We were able to get things rolling again in order to fulfill our mission!!!

2022 ​- We are in the process of making Chiari Fund better than it ever has been.

mission & vision

No need is too small and no voice is too quiet to be heard. We will devote the time and energy necessary to help those in need seek the help they deserve.

recent programs

We are working very hard on fundraisers to help our mission. Please go to our Fundraising page to learn more

Billy "Joey" Rowe, Founder and President