bobby jones csf news

Bobby Jones Chiari & Syringomyelia Foundation

what's happening

MARCH 2026

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.


IN-PERSON EDUCATIONAL LECTURE/ASK THE EXPERT

DATE: Wednesday, April 1 2026

TIME: 5:30pm Registration
5:45pm Peer to peer support and refreshments
6:00pm Lecture

EXPERT SPEAKER: Dr. David Bauer, Associate Professor of Surgery and Pediatrics at Baylor College of Medicine/ Texas Children’s Hospital, Houston, Texas

Topic: Cranio-cervical Instability in Pediatric Patients

LOCATION: Texas Children’s West Campus, 18200 Katy Fwy, Houston, TX 77094, Rooms: WH – 01A (WC.150.10); WH – 01B (WC.150.20)

REGISTER HERE FOR IN-PERSON ATTENDANCE

 

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, March 22, 2026 @ 5pm ET

Adult/Caregiver Support Meeting – Tuesday, March 24, 2026 @ 7pm ET

TBA

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!

TOPGOLF ACROSS AMERICA
Join us for unlimited game play for three hours, all you can eat buffet, and a chance to win prizes. Click below for more details and to register.

Tuesday, March 17 – Orlando, Florida

Thursday, April 16 – Alpharetta, Georgia

Sunday, April 19 – Cleveland, Ohio

Sunday, May 17 – Holtsville, New York

KEEP AN EYE OUT FOR A LOCATION NEAR YOU!!

SATURDAY, AUGUST 8
Research Open House: Meet the Researchers and Learn about their Chiari Research
Presented by Bobby Jones CSF in collaboration with Northeastern University’s Chiari NeuroBiomechanics Research Lab

Northeastern University
Boston. Massachusetts
REGISTER HERE

SATURDAY, OCTOBER 17
Dinner Dance for a Cure
Hilton Garden Inn
Twinsburg, Ohio
REGISTRATION COMING SOON

TUESDAY, OCTOBER 20
“Play it as it Lies” Open for Bobby Jones CSF
Bethpage State Park
Farmingdale, New York
REGISTRATION COMING SOON

SATURDAY, OCTOBER 31
International Night of Light Gala
Washington, DC
Registration Coming Soon

Keep an eye on our Events Calendar for more to come!