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 2025 Annual Fund to keep all of our important initiatives moving forward. Donate here.
We can’t do it without you!
EDUCATIONAL LECTURE
TBA
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. This month’s meetings are…
High School/College Support Meeting – Sunday, February 23 @5pm ET
Adult/Caregiver Support Meeting – Tuesday, February 25 @7pm ET
Chiari Surgical Success Scale – By the end of 2024, there were 1,567 patients screened for the CSSS study. Of the 306 eligible for the study, 258 enrolled and 80 participants (30%) have already completed their final assessments. Two new participating sites should be ready to enroll by February 2025. Big things are coming to this project over the next year, and we are excited for those changes to be made.
Upcoming research plans. We have major plans for our research efforts in 2025. We will be beginning a consensus effort for cranio-cervical instability in adult patients, continuing our CSSS study with new participating sites, engaging in additional projects that our partners initiate to better understand Chiari, syringomyelia and related disorders.
2025 CHAIRPERSON REGISTRATION
Join the unite4answers team by registering to be a 2025 Chairperson. We will work with you to set up your group event or solo walk. Register to be a Chairperson here.
NATIONAL SPONSORSHIP
More information about national sponsorships here.
If you would like to be a unite4answers national sponsor, you may register online and pay here. Deadline to be included on t-shirt is April 1, 2025.
If you would prefer to send in a check, complete this form and mail to:
Bobby Jones CSF, 69-39 Yellowstone Blvd. #216, Forest Hills, NY 11375.
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!
SATURDAY, MARCH 1
Casino Night – Honoring Paul Farrell, Bobby Jones CSF Chair Emeritus
Hilton Garden Inn
Staten Island, New York
PURCHASE TICKETS, SPONSORSHIP, OR JOURNAL AD HERE
SATURDAY, JUNE 28-MONDAY, JUNE 30
Together We Thrive Summit
Hilton Garden Inn Washington DC Downtown
Washington DC
Three days of lectures, wellness sessions, advocacy work & community fun! Meet physicians and researchers, join a community of patients and caregivers, and work alongside volunteers, board members and staff from the Bobby Jones Chiari & Syringomyelia Foundation.
REGISTRATION COMING SOON
BOOK YOUR HOTEL ROOM HERE
SATURDAY, OCTOBER 18
Dinner Dance for a Cure
Hilton Garden Inn
Twinsburg, Ohio
REGISTRATION COMING SOON
THURSDAY, NOVEMBER 6-FRIDAY, NOVEMBER 7
International Night of Light Gala
Rome, Italy
REGISTRATION COMING SOON
