bobby jones csf news

Bobby Jones Chiari & Syringomyelia Foundation

what's happening

NOVEMBER 2025

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 2025 Annual Fund to keep all of our important initiatives moving forward. Donate here.

We can’t do it without you!

VIRTUAL EDUCATIONAL LECTURE/ASK THE EXPERT

TUESDAY, NOVEMBER 18, 2025
7:30pm ET

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

Topic: Chiari Update: How to interpret the quality of the medical literature

REGISTER HERE FOR VIRTUAL 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 November 23, 2025 @ 5pm ET

Adult/Caregiver Support Meeting – Tuesday, November 25, 2025 @ 7pm ET

Transitioning care to adult providers. Conditions like Chiari malformation, hydrocephalus, and spina bifida are often treated by pediatric neurosurgeons, but the need for continuous care for these disorders extends well beyond the transition to adulthood. In fact, becoming an adult often marks the start of new challenges… and finding the adult providers who truly understand these complex conditions isn’t easy. This work has already begun. We completed interviews with existing transition programs and  started our preliminary outreach work. In July 2025, we submitted 6 abstracts to present at the upcoming annual meeting of the Joint Section in December 2025. Five of the six submitted were accepted to the meeting.

Learn more about why this work matters here. This page will continue to be updated over the next year!

2025 Research Colloquium. The 2025 Research Colloquium was held in Los Angeles, California on October 11, 2025. You can learn more about the Colloquium and review previous years’ meetings on our website.

As permissible, videos of this year’s presentations will be added to the BJCSF website over the coming months. Stay tuned!

Some of the presentations from this years meeting included:

  • Investigation of CSF flow dynamics in Chiari malformation and hydrocephalus – Peter Chiarelli, MD, DPhil | Phoenix Children’s Hospital, Phoenix, AZ
  • Chiari I and semi-sitting position for patients with high BMI – Hamid Borghei-Razavi, MD | Cleveland Clinic, Weston, FL
  • Rehabilitation strategies that protect/extend surgical outcomes in Chiari & craniocervical disorders – Marcia C. Perretto, DPT | ActifyPT, Boca Raton, FL
  • Implications of the expression of inflammatory and fibrotic markers in the CSF and arachnoid of patients with arachnoiditis and syringomyelia – John D. Heiss, MD | National Institute of Neurological Disorders & Stroke, Bethesda, MD
  • Intraoperative phase contrast MRI analysis of cerebrospinal fluid velocities during Chiari decompression – Anthony C. Wang, MD |  University of California Los Angeles, Los Angeles, CA
  • Early experience: Posterior vault distraction osteogenesis (PVDO) in Chiari – James Baumgartner, MD and Joseph Lopez, MD | Advent Health, Orlando, FL
  • The scientific basis for neuroplasticity-based physical therapy – Susan Chalela, MPT and Leslie Russek, DPT | Chalela Physical Therapy, Charleston, SC and Clarkson University, Potsdam, NY
  • Chiari, syringes, & scoliosis: expectations and outcomes – Mark Krieger, MD | Children’s Hospital of Los Angeles, Los Angeles, CA
  • Management of arachnoid cysts in conjunction with Chiari abnormalities – Zoe Teton, MD |  University of California Los Angeles, Los Angeles, CA

We are close to finishing up our 2025 unite4answers events and have had a record year!  Help us continue raising funds until the end of the year… you can make a difference!

November 16th is our last in-person event in Marietta, Georgia. You can support this event by donating here.

You can also support any of our “solo” unite4answer events. Just choose the link here for whomever you would like to support.

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!

THURSDAY, NOVEMBER 6-FRIDAY, NOVEMBER 7
International Night of Light Gala
Circolo della Caccia
Rome, Italy
MORE INFORMATION, PURCHASE TICKETS, SPONSORSHIP, OR JOURNAL AD HERE

SAVE THE DATE FOR OUR 2026 EVENTS

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

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