To advance knowledge through research and to educate the medical, allied sciences and lay community about Chiari malformation, syringomyelia and related disorders
Have you or your loved one been diagnosed with Chiari malformation, syringomyelia, Ehlers-Danlos syndrome, or another related disorder? Maybe you’ve had a diagnosis for a long time and you are looking for more information? Visit I am a Patient to learn more about things that matter the most to you. You’ll find more information about the disorders and better understand what to expect from surgery. You can also keep up-to-date on upcoming events that you can attend and any new research efforts.LEARN MORE
We take pride in our ability to share relevant information with doctors and other medical professionals. Visit I am a Doctor to read more detailed information about Chiari malformation, syringomyelia and related disorders and find out about our medical- and scientifically-oriented events. You can also learn more about our medical education program “Consider Chiari” and find out how to implement the program at your hospital or institution.Learn More
Advancing research is a critical part of the Bobby Jones CSF mission. As such, we make sure that we use our network of medical professionals and researchers to connect the dots between the clinic and the lab. We are passionate about encouraging information sharing to spark ideas that lead to breakthroughs.Learn More
Bobby Jones CSF is the only organization funding research, education, awareness and advocacy for Chiari malformation, syringomyelia and related disorders to have all three of the following accreditations: 1) Better Business Bureau's Wise Giving Alliance seal 2) Guidestar - Platinum Seal, 3) the Health-on-the-Net (HON) Code certification for accurate scientific/medical information. We were rated a 2020 Top Nonprofit independently by donors, patients and families and we recently received a 100 out of 100 Charity Navigator score, the only Chiari/syringomyelia charity with a 100% rating.
Learn more about who we are, our mission and why we do what we do.
Join Bobby Jones CSF's Support Community on Inspire to connect with other patients and families living with Chiari malformation, syringomyelia and related disorders. You control your level of anonymity at all times. "It's really helpful to me to talk to others who are going through the same things. Especially now with the pandemic, it's important for me to know there is a community of people that I can talk to at any time. I need to know I'm not alone." - Chiari Mom in Chiari and Syringomyelia Unite