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 Annual 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.


Dinner Dance for a Cure

Are you interested in sponsoring or purchasing tickets or a journal ad for the 2023 Dinner Dance for a Cure “in Paris” on Saturday, October 21st in Twinsburg, Ohio? Click here.

Available Sponsorships

In addition, we are now collecting items for auction and raffle baskets. If you can help out at all or if you need more information, please contact Cathy Poznik at (330) 573-5560. Hope to see you there!



unite4answers is a collection of fundraising events around the country to help fund medical research and education programs that foster better answers. These events bring people together who are living with the devastating effects of Chiari malformation, syringomyelia, Ehlers-Danlos Syndrome and related disorders. You can read more about unite4answers here.

Our unite4answers September Events…

See all the event locations here.

We invite you to join us as an Event Chairperson, participant, or solo walker. If you are interested in chairing a unite4answers event, please register here. Or join us for a solo walk (register here)!

Did you know that if you collect $10 from 5 friends, you will earn the 2023 unite4answers t-shirt and a light-up item? Earn incentive prizes based on how much you raise.  See them here.


This month’s Ask the Expert will be announced shortly!

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, for ADULTS every last Tuesday of the month at 7:00pm ET, and for PARENTS and CHILDREN quarterly, on the second Tuesday of the month.

The Children’s support meetings will take place just prior to the Parent’s meetings, at 6:30pm ET. A parent or caregiver must be present with the child at the children’s meetings. Registration is part of the Parent’s registration (there is an extra question to answer regarding whether you will be attending the child’s meeting at 6:30pm)

High School/College Support Meeting – Sunday, September 24 @5pm ET

Adult Support Meeting – Tuesday, September 26 @7pm ET


2023 Research Colloquium. Every year, the BJCSF hosts a research meeting to highlight new research findings in Chiari, syringomyelia and related disorders and their clinical implications. Below are the presentations that will be given at this year’s conference in Washington, DC on Saturday, September 9th:
Insights on the Hydrodynamics of Chiari Malformation
Olivier Balédent, Ph.D. (Image Process Unit) & Cyrille Capel, M.D., Ph.D. (Neurosurgery)
Hospital University Center of Amiens-Picardie | Amiens, France
Cerebrospinal Fluid Hydrodynamics in Chiari I Malformation and Syringomyelia: Modeling Pathophysiology
John D. Heiss, M.D. | Surgical Neurology Branch
National Institute of Neurological Disorders & Stroke, National Institutes of Health | Bethesda, MD, USA
Establishing a Novel Neural Tissue Deformation Biomarker for Type 1 Chiari Malformation: Preliminary Results
Gwendolyn Williams, MSc. | Biological Engineering
Johns Hopkins Hospitals and University | Baltimore, MD, USA
Experimental work to improve CSF shunt function
Joyce Koueik, M.D. | Neurosurgery Resident
University of Wisconsin-Madison | Madison, Wisconsin, USA
CranioSense: A path towards non-invasive intracranial hypertension diagnosis and monitoring
Ryan Myers, Ph.D. | Medtech
CranioSense | Bedford, MA, USA
Psychological implications in adults with Chiari malformation
Philip Allen, Ph.D. | Psychology
University of Akron | Akron, Ohio, USA
Keeping Shunts Working: First Experiences with the ReFlow™ Mini Flusher
Mark Geiger | Biotech
Anuncia Medical Inc. | Scottsdale, Arizona, USA
Chiari diagnostics: sagittal vs. axial PCMR.
Spinal cord movement: an indication of the underlying cause of symptomatic Chiari I?
Mark Quigley, Ph.D. | Honorary Fellow, Dept Neurological Surgery
University of Wisconsin School of Medicine and Public Health | Mclean, VA, USA
Physical therapy management of Chiari and related disorders
Trish Meegan, DPT,L , ATC | Physical Therapy
Warwick, RI, USA
Translational genomics of congenital CSF disorders
Kristopher T. Kahle, M.D., Ph.D. | Pediatric Neurosurgery & Neuroscience
Harvard University | Boston, Massachusetts, USA
Fourth ventricular subarachnoid stent for Chiari-associated persistent syringomyelia
Rachael K. Han, B.A. | Medical Student MSY3
Weill Cornell Medical School | New York, NY, USA
Chiari Surgical Success Scale Update. There are already 6 enrolling sites in this study, with an additional 11 sites coming on by the beginning of next year. There have already been 669 patients screened for this study, and an incredible 129 adult and pediatric patients have already agreed to be a part of this groundbreaking study. We are incredibly thankful to all the patients, parents, clinicians and researchers who are involved in this work. We are hopeful that this project will be the first to develop a real prognostic tool to determine surgical candidacy before anyone gets to the operating room.


Cabs for Chiari
Saturday, September 16, 2023
DeLille Cellars
Woodinville, WA
Wine, food, music, silent auction
Purchase tickets

TopGolf for Bobby Jones CSF
Sunday, October 1, 2023
TopGolf Holtsville
Holtsville, NY
Unlimited game play, open bar, food, a chance to win $10,000 and more! Sponsored by Dr. Catherine Loughin with proceeds to benefit Bobby Jones CSF.
Registration and Sponsorship Opportunities

Fire Maker presents The Calamity Jane Charity Cup benefiting Bobby Jones CSF
Wednesday, October 11, 2023
Bobby Jones Golf Course
Atlanta, GA
Tournament, breakfast, lunch, Fire Maker beer, silent auction, awards, party
Individual registration
Foursome registration
Sponsorship opportunities

Dinner Dance for a Cure “In Paris
Saturday, October 21, 2023
Twinsburg Hilton Garden Inn
Twinsburg, Ohio
Cocktails, dinner, dancing, silent auction
Purchase tickets, sponsorships or journal ad here
Invitation (PDF)

International Night of Light Gala
Saturday, October 28, 2023
Morikami Museum
Delray Beach, Florida
Tickets and sponsorships

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!