Bobby Jones CSF is committed to providing current and accurate medical information to educate patients and their families.
Looking for a physician? You can use the tools on this page to help find a physician near you.
The handbook is an excellent resource for patients and medical professionals. All educational material on this website is written and reviewed by our Scientific Education & Advisory Board Executive Committee before publication. This material is designed to help individuals understand the disorders and treatments in order to make knowledgeable decisions about their care. The information provided is designed to complement, not replace, the relationship between a patient and his or her physician and medical team.
If you have further questions, or you happen to think of some while doing your research, please feel free to contact us at any time!
Learn more about the various diagnoses that may be associated with Chiari malformation and syringomyelia. You can also watch any of the videos available on our YouTube channel with experts discussing and describing these disorders, their treatment options and more!
Patients, parents and doctors often have to decide whether surgery is a good option in each individual case. Learn more about this decision-making process, find a list of items to bring to the hospital for surgery and learn what to expect after a surgery.
As a patient or the parent of a patient, you have rights and it’s important to know them.
Excellent resources for parents of a child with Chiari, syringomyelia or a related disorder and who’re not sure where to begin.
Along with several partners, Bobby Jones CSF created Chiari@School to help parents navigate the educational system and ensure that their child never falls behind— all while having a more positive learning experience!
A collection of resources and valuable information that you may find helpful.
BJCSF has partnered with our friends at the Child Neurology Foundation and Unite Us to help connect patients and caregivers with services that can help them in the ways that we cannot!
When you’re dealing with difficult disorders like these, it’s important to know you’re not alone. Join our community on Inspire and get in touch with fellow patients, parents and caregivers. Ask questions, find advice and control your level of anonymity the entire time.
To find live, virtual support meetings, check our Events page.
Visit our I am A Researcher section for more information about our research programs and the different projects that you can get involved in, like the International Patient Registry.
You can get started right away by taking less than two minutes and tell us about your experience or your child’s experience with the “5mm rule” in Chiari. Additional studies are ongoing and will continued to be added!
Was this information helpful? Please consider supporting us so that we can continue providing information to the public and advancing research efforts for the cure. We have been forced to cancel many of our regular fundraising events, your online support at this time is so important.
