Welcome to our News page! Each month, we’ll share important, interesting, and newsworthy updates from the Bobby Jones CSF community—along with information we think you’ll want to know.
Stay up to date on our programs, upcoming educational and fundraising events, virtual Support Group and Ask the Expert meetings, research initiatives, and more. We look forward to keeping you informed and connected to all that’s happening at Bobby Jones CSF!
See Chiari. Understand Chiari. Change Lives.
For too many people living with Chiari malformation, getting answers can be a long and difficult journey. This September, join us in raising awareness and helping patients, families, and healthcare professionals better understand Chiari.
DATE:
Thursday, September 17, 2026
TIME:
6:00pm ET
REGISTER HERE FOR VIRTUAL ATTENDANCE
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DATE:
Wednesday, September 30, 2026
TIME:
5:00 p.m. Patient to patient discussion group
6:00 p.m. Break
6:30 p.m. Lecture
LOCATION:
Medical University of South Carolina
68 President Street
Bioengineering Building, Room 112
Charleston, SC 29403
EXPERT SPEAKER:
Ms. Tayler Goectau
TOPIC:
hEDS genetic lab update
REGISTER HERE FOR IN-PERSON 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, September 20, 2026 @ 5pm ET
Adult/Caregiver Support Meeting – Tuesday, September 29, 2026 @ 7pm ET
Presented by the Chiari Neurobiomechanics Research Lab (CNRL) and the Bobby Jones Chiari & Syringomyelia Foundation
On August 8th, the 2026 Chiari Research Open House brought together researchers, clinicians, patients, and students for a full day of scientific talks, poster presentations, and live demonstrations centered on Chiari malformation, cerebrospinal fluid dynamics, and neurobiomechanics. The event showcased the latest work from the Chiari Neurobiomechanics Research Laboratory at Northeastern University alongside invited presentations from leading researchers and surgeons across the field.
Also included was a dedicated Patient Experience session, featuring talks from CMI patient advocates and individuals living with Chiari malformation — bridging the gap between clinical research and the patient community. All were welcome: engineers, neuroscientists, surgeons, students, patients, and anyone curious about this important area of research.
If you missed the presentations or would like to hear them again, please find them here!
Special thanks to the Robinson Foundation for supporting Dr. Loth and colleagues’ research. We can’t wait to present results when their projects are complete!
Some feedback from attendees:
“The patient experience segment was positive. It’s always interesting to hear other individual’s journey. Sharing the coffee breaks with the presenters and having the opportunity to speak with them in a casual manner was great. Dr. Kasper said, ‘I’m here for you. Ask me anything.’ Hearing the different specialists talk about their areas of research was very comforting that there are people devoting their lives to figuring out Chiari. This event was a great day, and I would do it again in a heartbeat, with my son again :)”
“This was a great conference. I learned a lot of new information about Chiari. I appreciated that the information presented was easy to understand for patients and accessible. I really loved hearing from other patients. The whole event was well organized and easy to attend.”
“Just wonderful and amazing. Please keep bringing patients, researchers and doctors together!”
Looking for a way to get involved this Chiari Awareness Month?
You don’t need a whole crew to make a difference… Join us for a Solo Walk to raise funds, share your story, and spread Chiari awareness one step or roll at a time. Raise $50 and get a 2026 unite4answers T-shirt, plus unlock awesome incentive prizes as you raise more.
Register to become a chairperson HERE or contact cpoznik@bobbyjonescsf.org for more info.
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!
TOPGOLF ACROSS AMERICA
Join us for unlimited game play for three hours, all you can eat buffet, and a chance to win prizes. Click below for more details and to register. KEEP AN EYE OUT FOR A LOCATION NEAR YOU!!
Sunday, September 20 – Mobile, Alabama
Thursday, October 1 – Charleston, South Carolina
Saturday, December 5 – Baltimore, Maryland
SATURDAY, OCTOBER 17
Dinner Dance for a Cure
Hilton Garden Inn
Twinsburg, Ohio
REGISTER HERE
TUESDAY, OCTOBER 20
“Play it as it Lies” Open for Bobby Jones CSF
Bethpage State Park
Farmingdale, New York
REGISTER HERE
SATURDAY, OCTOBER 31
International Night of Light Gala
The Metropolitan Club
Washington, DC
REGISTER HERE
