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ABOUT US

Founded in 2013 by Billy “Joey” Rowe, Chiari Fund is dedicated to helping those in need who have become afflicted by Arnold Chiari Malformation (ACM), Tethered Cord Syndrome (TCS), Syringomyelia (SM), Ehlers Danlos Syndrome (EDS), Craniocervical Instability (CCI), and other related disorders. The vision of the organization came from his own experiences with having Chiari, Craniocervical Instability, and Tethered Cord with him seeing 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. Joey saw this as a void in the community and thereby Chiari Fund was born.

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. Our means of fundraising are, but not limited to, direct donations, fundraising, and grants. 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.

FAQ'S

How do I contact you?

You can contact us by clicking Here

How do I apply for financial assistance?

Click on the “Assistance” option and follow the instructions on that page. The actual application is not on the page because a phone interview is required first. Once that is finished, you will be provided an application.

How do I know that my application has been received?

You will receive a notification from us within 24 hours that your application has been received. If you do not hear from us after 24 hours, please reach out to us via email or phone.

Is there a cap on the amount of financial assistance that can be requested?

No, any amount can be requested. However, the amount of funding available will play a vital role in the amount of funds that Chiari Fund can allocate to any application.

How is an application approved or denied?

All applications are reviewed by the board or officers of Chiari Fund. When funding is available, the board will hold a meeting, and an affirmative vote by the majority of the board will decide on the approval or denial of any application, along with the amount of financial assistance that will be granted. You will be an integral part of the entire process and will receive frequent updates.

What happens if I submitted an application, and there is no funding?

Your application will be held until such time that there is funding. This is why our fundraisers, grants and donations are of the utmost importance to us. Our goal is to help as many people affected by a Chiari Malformation and Related Disorders.

I have a condition related to a Chiari that is not listed, am I still eligible?

If you feel you have a condition that is related to a Chiari, but is not listed, you may still apply for assistance. The determination as to whether or not you will be eligible will be made by an affirmative vote of the majority of the Chiari Fund board.

How will I know if my application was approved or denied?

You will receive a notification of the decision of your application once it has been voted on by Chiari Fund's board.

Who are the members of the Chiari Fund board?

Board member’s names and contact information is listed on our website, on the “Home” page as well as the “About Us” page.


What is a 501(c)(3) Status?

Section 501(c)(3) is the portion of the US Internal Revenue Code that allows for federal tax exemption of nonprofit organizations, specifically those that are considered public charities, private foundations or private operating foundations. It is regulated and administered by the US Department of Treasury through the Internal Revenue Service. There is other 501(c) organizations, indicated by categories 501(c)(1) – 501(c)(28).


Do you have a 501(c)(3) Status?

Yes, we are recognized by the IRS as a 501(c)(3) nonprofit. Furthermore, no one at Chiari Fund receives any financial compensation whatsoever. Our board members are committed to Chiari Fund's cause, and work together out of their love for the cause in helping those affected. We are registered with the State of North Carolina as a nonprofit and our Federal Tax ID Number is 46-2933214. 

What kind of proof is needed with my application?


We request a copy of your diagnosis, appointment verification, character reference from a professional on their letter head, and proof of income. From there it depends on the type of assistance you are applying for; it is all listed on our application. If you have trouble obtaining any of these documents we are happy to work with you on an individual basis.

How can I help?

There are several ways you can help. From time to time, we will need volunteers for certain fundraisers. If this is something you may be interested in, please contact us. Our fundraisers are extremely important to us, please share them and help us get the word out! The more funds we have available; the more people we can help. We will also feature one story a month about one person affected by Chiari or Related Disorder. If you would like to share your story and possibly have it featured please contact us by clicking Here.

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