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.
DATE: Thursday, January 29, 2026
TIME: 5:30 – 6:00pm – Registration and refreshments
6:00 – 6:30pm – Introductions and support meeting
6:30 – 7:30pm – Educational Lecture
EXPERT SPEAKER: Dr. Brandon G. Rocque
Topic: Chiari and the importance of collaborative research
LOCATION: Children’s of Alabama, 1600 4th Ave S, Lee Building, Training Room #2, Birmingham, AL 35233
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 Inspire.com – 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. This month’s meetings are…
High School/College Support Meeting – Sunday, January 25, 2026 @ 5pm ET
Adult/Caregiver Support Meeting – Tuesday, January 27, 2026 @ 7pm ET
A New Era for Chiari Research
December marks a turning point for the Bobby Jones CSF community. We are thrilled to announce the next phase of our mission: with major updates to the Chiari Clinical Research Consortium. It signals a fundamental shift in how we find a cure. For the first time, the BJCSF research database will serve as the primary engine for the newly established Chiari Research Interest Group of the AANS/CNS Joint Section on Pediatric Neurosurgery.
Unprecedented Collaboration: Over 60 neurosurgeons across 40 elite institutions will be working in sync, rather than in isolation.
Cutting-Edge Technology: We will implement AI and machine learning tools to analyze data at a speed and depth never before possible.
The Patient Voice: Most importantly, our framework will directly integrate patient-reported data, ensuring that research is driven by the lived experiences of those we serve.
By bringing this many minds together to look at the same data, we are drastically shortening the timeline for scientific breakthroughs in diagnosis, treatment, and long-term care.
CHAIRPERSON REGISTRATION
Join the unite4answers team by registering to be a 2026 Chairperson. We will work with you to set up your group event or solo walk. Register here.
Be part of the amazing team that has raised almost $2.9 million to help fund programs and research. Our driving force for research is improving the lives of families affected by Chiari, syringomyelia and related disorders. We are collaborating and supporting projects spanning many topics, both internal and external to the organization. Read more!
NATIONAL SPONSORSHIPS
More information about national sponsorships here.
If you would like to be a unite4answers national sponsor, you may register online and pay here. Deadline to be included on t-shirt is March 27, 2026.
If you would prefer to send in a check, complete this form and mail to:
Bobby Jones CSF, 69-39 Yellowstone Blvd. #216, Forest Hills, NY 11375.
Bobby Jones CSF is committed to helping the over 3.5 million people in the United States, and my more worldwide, who are living with Chiari malformation, syringomyelia, and related disorders. Our fundraising supports the organization’s critical research initiatives and provides comprehensive support services and educational programs to everyone affected by these disorders. Join us at an event near you!
SATURDAY, FEBRUARY 28
Casino Night
The Fox Hollow
MORE INFORMATION, PURCHASE TICKETS, SPONSORSHIP, OR JOURNAL AD HERE
SATURDAY, OCTOBER 17
Dinner Dance for a Cure
Hilton Garden Inn
Twinsburg, Ohio
REGISTRATION COMING SOON
