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 2024 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!
VIRTUAL ASK-THE-EXPERT
Thursday, May 9th – 7:30pm ET
Expert: Dr. Fraser C. Henderson, Sr.
Topic: Craniocervical instability in patients with Ehlers-Danlos syndromes: outcomes analysis following occipito-cervical fusion
Have a topic of interest? Contact: mpoppe@bobbyjonescsf.org
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.
High School/College Support Meeting – Sunday, May 19, 2024 @ 5pm ET
Adult & Caregiver Support Meeting – Tuesday, May 28, 2024 @7pm ET
2024 Think Tank. This year’s annual Think Tank took place on May 3rd in Chicago, Illinois. Some of the presentations are already available for review, including this important re-evaluation of what disorders of the craniocervical junction are called and how they are effectively managed. For instance, watch Dr. Douglas Brockmeyer introduce the concept of “primary rhombencephalopathy” to try and fix this “naming” issue.
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.
Check out the current lineup for the 2024 unite4answers events here. If you are interested in helping out but cannot put together an in-person event, please consider participating in a solo walk. Just complete this form and select solo walk from the drop-down menu. A customized fundraising link will be sent to you that you can share with family and friends. AND you can earn a t-shirt and other incentive prizes based on what you raise! See attached incentive prizes here.
A huge shout out and thank you to the 2024 unite4answers National Sponsors. We appreciate your commitment to help make a difference for the millions of families affected by these disorders.
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!
Sunday-Monday, September 8 & 9
Bobby Jones Classic at Sea Island
More information and register here
Sea Island Resort
St. Simons Island, Georgia
Saturday, October 19
Dinner Dance for a Cure
Purchase tickets, sponsorship, or journal ad here
Hilton Garden Inn
Twinsburg, Ohio
Saturday, November 23
International Night of Light Gala
Purchase tickets, sponsorship, or journal ad here
Sunset Club
Seattle, Washington
