bobby jones csf news

MARCH  2024

Welcome to our News page! Every month, we will share important, interesting or newsworthy information about what’s happening with Bobby Jones CSF and what we feel you may want to know! Learn about our programs, upcoming educational and fundraising events, virtual support group & Ask the Expert meetings and research projects. We look forward to sharing it all with you!

Please consider supporting our 2024 Annual Fund to keep all of our important initiatives moving forward. Donate here.

We can’t do it without you!

Every dollar you donate is put to work exponentially. These pages highlight the work your donations have made possible just last year.



Monday, March 4th – 4:00-6:00pm PT
Stanford Center for Academic Medicine
Meeting Room: Grand Rounds
453 Quarry Rd
Palo Alto, CA 94304

Dr. Cormac Maher, Stanford University
Topic: Update on Chiari

Dr. Xiang Qian, Stanford University
Topic: Pain Treatment in Chiari


Have a topic of interest? Contact:


Are you looking for support but maybe aren’t ready for a face-to-face group meeting yet? Maybe the timing of the meetings aren’t good for you? You can join our online support group on – Chiari & Syringomyelia Unite.

We hold a support meeting for those who are HIGH SCHOOL and COLLEGE aged every last Sunday of the month at 5:00pm ET and for ADULTS & CAREGIVERS every last Tuesday of the month at 7:00pm ET.

High School/College Support Meeting – Sunday, February 25 @5pm ET

Adult & Caregiver Support Meeting – Tuesday, February 27 @ 7pm ET

**NEW OPPORTUNITY** Idiopathic Intracranial Hypertension: Patient Advisory Committee. If you or your child has ever had idiopathic intracranial hypertension (IIH), sometimes called “pseudotumor cerebri”, there is an exciting new advisory committee forming! This advisory committee will play a major role in developing the actual research plan for a clinical trial that will aim to answer lots of unanswered questions about IIH. The committee will start meeting in either March or April. If you are interested, please contact Kaitlyn.

Chiari Surgical Success Scale. The first-of-its-kind research study continues! The main goal of this study is to develop a tool that doctors can use with patients when they first come into the office to decide if surgery is the best treatment option for them, personally. We’re very excited that our newest partner on this project, Dr. Harter and his team at New York University have officially begun enrolling in this study! Learn more about this project here.

International Patient Registry: The Future. We are in the middle of analyzing more data from the international patient registry. We’re hoping to be able to report back on some of our exciting findings soon! In the meantime, we have big plans for our registry. We are starting a strategic plan process with our SEA Board to best strategize how to bring all our efforts under a single “roof”. A database like the one Bobby Jones CSF is envisioning will finally provide the quality, peer-reviewed research that can allow doctors to give real answers to the families who struggle with these disorders. Even though a bulk of the scientific work will be done by researchers, Bobby Jones CSF wants to ensure that any future database projects remain 100% patient-centered… so we need your help! Tell us what are the most important problems that you think a patient registry and clinical research consortium should address. Let’s make sure the researchers who are studying Chiari, syringomyelia and related disorders are doing research that will actually be able to help families long-term!


unite4answers is a collection of fundraising events around the country to help fund medical research and education programs that foster better answers. These events bring people together who are living with the devastating effects of Chiari malformation, syringomyelia, Ehlers-Danlos Syndrome and related disorders. You can read more about unite4answers here.

Join us as a national unite4answers sponsor! Deadline to be included on the shirt is 4-1-2024. Please contact Cathy Poznik at for more information.  Thank you to the sponsors already committed.

Would you like to host your own unite4answers event or complete a solo walk?  Just complete this form and Cathy will contact you.


Sunday, April 28
TopGolf for Bobby Jones CSF
Purchase tickets soon!
TopGolf Holtsville
Holtsville, New York
*Early bird pricing until April 1, 2024*

Sunday-Monday, September 8 & 9
Bobby Jones Classic at Sea Island
More information and register here
Sea Island Resort
St. Simons Island, Georgia

Saturday, October 19
Dinner Dance for a Cure
Purchase tickets soon!
Hilton Garden Inn
Twinsburg, Ohio

Saturday, November 23
International Night of Light Gala
Purchase tickets, sponsorship, or journal ad soon!
Sunset Club
Seattle, Washington