I want to DONATE

Donate Online

While the restrictions related to COVID-19 are certainly important to keep us all healthy and safe, they are jeopardizing more than $1.5 million in new research and education for Chiari malformation, syringomyelia and related disorders.


Bobby Jones once said, “You get good breaks from bad shots and you get bad breaks from good shots… but you have to play the ball where it lies.” We can’t control everything in times like these but, today, we are focusing on what we CAN control.

Here’s some GOOD NEWS! We started the ball rolling on the Chiari Clinical Research Network (CCRN), a network of doctors uniting to develop research studies that will produce an international collection of data about Chiari malformation, syringomyelia and related disorders. The data collected will allow new, innovative research projects to move forward and fundamentally change the way these disorders are diagnosed and treated. LEARN MORE ABOUT THE CCRN HERE.

But the BAD NEWS is, we lost two major fundraising events last year and are hoping to get the momentum going in 2021. The millions of families around the world who are affected by these disorders need us now, more than ever. So while school, work, and fun events might all be canceled right now… HOPE IS NOT! Our mission to advance research and educate the world about these disorders has not been canceled, either. And we fully intend to move forward with all our plans to make a difference!

Bobby Jones CSF, the Bobby Jones Chiari and Syringomyelia Foundation, is a 501(c)(3) non-profit organization (TAX ID NUMER: 26-1316274).  In giving today, you will offer hope to the millions of children and adults worldwide who are living with the effects of Chiari malformation, syringomyelia, and related disorders like Ehlers-Danlos syndrome and others.

Consider making a general donation to continue advancing research, educating and empowering families to be their own advocates and improving knowledge among medical professionals.



Want to help support even more education and research? Please consider giving a monthly, recurring gift! This is a great way to maximize your generosity and help even more families who may be struggling.


2021 Casino Night

2021 Virtual Dinner Dance for A Cure

2021 International Night of Light Gala: Tickets, Research Sponsorship, Underwriting or Donation

There is no fee to participate in a 2021 unite@night walk. Find a walk site near you!

By Mail:

To send in a donation by mail, please send your tax-deductible contribution to 

Bobby Jones Chiari & Syringomyelia Foundation
29 Crest Loop
Staten Island, NY 10312

All checks can be made payable to “Bobby Jones CSF.”