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.

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, July 23rd @5pm ET

Adult Support Meeting – Tuesday, July 25th @7pm ET

Participating in the 2023 NINDS Nonprofit Forum. Bobby Jones CSF will be participating in and presenting a poster on some of our work at the 2023 Nonprofit Forum. This event is hosted annually by the National Institutes of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health (NIH). This year will include sessions on genetics research and therapies, pharmaceutical and device research, and the general study of rare or misunderstood disease.

Chiari Surgical Success Scale continuing to expand. New sites are being onboarded during the month of July to expand this study. These sites include institutions like Mayfield Clinic, Dayton Children’s Hospital, Johns Hopkins All Children’s Hospital and Rady Children’s Hospital, among others. More than 90 patients have already enrolled in this study, which puts us a quarter of the way to our enrollment goals. This is especially exciting since only 5 of the 17 sites currently enrolling at this time.

Thanks are deserved to all the patients and families who have agreed to be a part of this research. Your willingness to answer questions and provide information about your/your child’s Chiari and related disorders will help many patients in the future better understand how a surgery will go before they ever get close to an operating room!

Planning this year’s Research Colloquium. Presenters are being invited for the 2023 Bobby Jones CSF Research Colloquium. The goal of this year’s meeting is to identify and discuss both neurosurgical issues as well as non-medical management of symptoms, including physical therapy, cognitive therapy, and pain management. More details to come!