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.
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, April 19, 2026 @ 5pm ET
Adult/Caregiver Support Meeting – Tuesday, April 28, 2026 @ 7pm ET
Patient Empowerment Interest Group. Your journey is more than a diagnosis… it’s the missing piece to better care. 🧩 We’re actively looking for members for our Patient Empowerment Interest Group to help us.
🎯 Guide us on which research projects get funded.
🛠️ Create practical tools for daily symptom management.
🗣️ Ensure care remains rooted in the actual patient experience.Low pressure, high impact. You choose your level of involvement based on your energy and schedule. 👉 Apply to join the group here: https://forms.gle/Le7KupMiiJraACJx6
Preview: 2026 Think Tank Meeting. Our annual Think Tank returns this April! Beyond our strategic research planning sessions, we are thrilled to host groundbreaking presentations from leaders in the field. Here is a sneak peek at what’s on the agenda:
We are committed to bringing the brightest minds together to turn these insights into better care for patients living with Chiari, syringomyelia and related disorders.
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. KEEP AN EYE OUT FOR A LOCATION NEAR YOU!!
Thursday, April 16 – Alpharetta, Georgia
Sunday, April 19 – Cleveland, Ohio
Sunday, May 17 – Holtsville, New York
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
The Metropolitan Club
Washington, DC
REGISTRATION COMING SOON
