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.
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Every dollar you donate is put to work exponentially. These pages highlight the work your donations have made possible just last year.
VIRTUAL ASK-THE-EXPERT
NEW DATE: Thursday, May 9th – 7:30pm ET (ORIGINALLY SCHEDULED FOR APRIL 25TH)
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.
Adult & Caregiver Support Meeting – Tuesday, April 23 @ 7pm ET
High School/College Support Meeting – Sunday, April 28 @5pm ET
Preparation for Research Meetings. This month, we are gearing up for two major research meetings in May. The 2024 Think Tank will take place the first week of next month in Chicago, IL. In addition to presentations of new research results, this meeting will include updates on ongoing projects like the Chiari Surgical Success Scale and craniocervical instability projects. Last year’s Chiari/syringomyelia research award winner, Dr. Belinda Shao, will also be presenting her award-winning work on cognition in Chiari patients.
Chiari Surgical Success Scale. This study is continuing to collect data on patients who are undergoing Chiari surgery. There is very little high-quality, multi-center research on Chiari disorders. To change this, a number of research centers have come together to try and develop the Chiari Surgical Success Scale (CSSS). This will be the first scale that will use symptoms, clinical signs and medical imaging information to identify characteristics that might predict a good surgical outcome.
We are hopeful that the CSSS tool will be useful for many people in the future… It’s the closest thing we will have to “precision medicine” in Chiari for many years! Learn more about the study here.
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 there isn’t a location near you, just reach out to Cathy at cpoznik@bobbyjonescsf.org or complete this form and she can help you set up an event, as simple as a solo walk, or an in-person group event. It’s easy and it feels so good to be part of a team making a huge difference!!
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.
Sunday, April 14
Masters Watch Party
Register here
Deep Roots Roswell
Roswell, GA
Sunday, April 28
Topgolf for Bobby Jones CSF
Early bird registration (until April 12th): $100 per person
Regular registration (after April 12th): $125 per person
Register here
TopGolf Holtsville
Holtsville, New York
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
