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 2023 Year-End 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 in just one calendar year.


Thursday, December 7th @7:30pm ET – Virtual Ask the Expert featuring Dr. Shobhan Vachhrajani, Dayton Children’s Hospital, speaking on the topic of “You Don’t Always Need Surgery for the Chiari!” REGISTER HERE.

Thursday, December 14th @7:30pm ET – Virtual Ask the Expert featuring Matt Sheers, Coach and Account Manager, Karuna Labs, speaking on the topic of “KarunaHOME Program – Virtual Embodiment Training With Pain Coaching” REGISTER HERE.

These lectures are accessible via a virtual platform, and will be recorded and shared on our website and YouTube channel at a later date.

Have a topic of interest? Contact:


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 – Tuesday, December 19th @5pm ET

We will resume our Adult and Caregiver Support Meeting in January. See you next year!


We’ve been very busy this year putting on a lot of research projects, programs and meetings. Our 2023 Think Tank and Research Colloquium involved the sharing of exciting new research

2023 Chiari Research Award Winner. Congratulations to 2023 BJCSF Award Winner Belinda Shao, MD, MPH!

Dr. Shao’s work entitled “Effect on Affect: Postsurgical Change in Cerebellar Neuropsychiatric Rating Scale Scores in Adults and Children with Chiari Malformation Type I” was selected as this year’s winning abstract by an executive body of pediatric neurosurgeons. Winning abstracts are selected for their excellence in the study of Chiari, syringomyelia and related disorders at the annual meeting of the AANS/CNS Joint Section on Pediatric Neurosurgery.

We look forward to continuing this award at next year’s meeting in 2024! The goal of this annual award is to promote interest in the study of Chiari and syringomyelia in younger neurosurgeons and researchers-in-training. Involving new researchers leads to a higher likelihood of future breakthroughs.

Consensus Efforts: Craniocervical Instability. Last week, we hosted a second meeting to come to consensus on certain clinical characteristics and diagnostic criteria of craniocervical instability in children. There were 20 surgeons in attendance, all with varying viewpoints.

We were thrilled that consensus was found in a few more areas that were particularly contentious, such as the use of cervical collars in diagnosis and what symptoms are likely to indicate the need for surgery.

We’re even more excited to announce that a parallel effort is being undertaken to replicate this work in adult patients in preparation for a large-scale prospective study. A prospective study in adults will be able to answer serious questions about the usefulness and long-term success of fusion surgeries in patients.

Transition of Care. Believe it, or not: children with these disorders tend to become adults with these disorders. But there is no standard manner by which those children are transferred to adult doctors for future management and potential treatment.

We are honored to be part of an effort with the AANS/CNS Joint Section on Pediatric Neurosurgery to better understand how some institutions are able to seamlessly transfer patients to adult care and to standardize it so those methods can be used at any institution or clinic all around the country. More to come on this in 2024.

Chiari Surgical Success Scale. All the while, the CSSS study is still ongoing. Our partners at CSSS sites are actively enrolling patients and are the reason we have been able to enroll an incredible 125 patients, so far.

Thanks to our teams at each site and their incredible patients who are making a difference for so many in the future. Looking forward to a successful 2024!


Thank you to all the chairpersons and participants of the 2023 unite4answers campaign. We had an amazing inaugural year after changing our campaign name from unite@night to unite4answers. We had over 1,200 participants and raised over $300,000!!

If you are interested in participating in 2024, be on the lookout in January for a sign-up link to be a chairperson. Let’s talk about what you would like your event to look like!



March 2, 2024
Casino Night
Registration coming soon

Hilton Garden Inn, Staten Island, New York

April 28, 2024
TopGolf for Bobby Jones CSF
Registration coming soon
TopGolf Holtsville, Holtsville, New York

September 8, 2024
Bobby Jones Classic
Register here

Sea Island Resort, St. Simons Island, Georgia

October 19, 2024
Dinner Dance for a Cure
Registration coming soon

Hilton Garden Inn, Twinsburg, Ohio

November 23, 2024
International Night of Light Gala
Registration coming soon

Sunset Club, Seattle, Washington

Support Bobby Jones CSF with online shopping

As you may know, Amazon Smile shut down in February. We thank you for choosing Bobby Jones CSF as your charity through this program and as a result, we received over $11,000 from your everyday shopping!

We know you are passionate about Bobby Jones CSF and want to let you know that we are now partnering with the  ShopRaise app, which gives a portion back to us whenever you do your normal shopping online at over 1,000 stores like Macy’s, Home Depot, and Walmart. 

Please help us support and promote our program by doing these 3 simple things:

  • Click the link below to get the ShopRaise app
  • Use tools in the mobile app to share it with family and friends
  • Shop online to support and help us reach our fundraising goals

Click here to get started.  With your help, we can make a difference in the lives of the community we serve!