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!
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.
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.
We invite you to join us as an Event Chairperson, participant, or solo walker. If you are interested in chairing a unite4answers event, please register here.
Or join us for the solo walk (Register here)!
Did you know that if you collect $10 from 5 friends, you will earn the 2023 unite4answers t-shirt and a light-up item. Earn incentive prizes based on how much you raise. See them here.
7/6 @5:00pm ET – In-person at Medical University of South Carolina, meet and greet followed by a lecture featuring Dr. Sunil Patel who will present “An Open Discussion About Cerebral Spinal Fluid.” REGISTER HERE.
7/18 @5:30pm ET– In-person at Weill Cornell, meet and greet followed by an interview and Q&A featuring Dr. Greenfield and special patient guest on “I have just been diagnosed, now what?: A Patient’s Perspective.” A patient will share their personal journey and answer any questions to help guide those who have just been diagnosed with Chiari and syringomyelia. This lecture will not be livestreamed but it will be recorded and shared on our website and YouTube channel at a later date. REGISTER HERE.
7/20 @7:30pm ET– Virtual Ask the Expert Virtual Q&A featuring Dr. Greg Olavarria. Dr. Olavarria will speak about and answer questions on Congenital concerns for parents with infants: Hydrocephalus at birth, cysts, prematurity and intraventricular hemorrhage, craniosynostosis. This lecture is accessible via a virtual platform, and will be recorded and shared on our website and YouTube channel at a later date. REGISTER HERE.
Have a topic of interest? Contact: firstname.lastname@example.org
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)
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!
Mt. Pleasant Open
July 28-30, 2023
Patriots Point Links
Mt. Pleasant, SC
Includes: Entry, Prizes, Tee Gift, and Food
New This Year: A tournament kick-off party with a shootout, live music, food, drinks, and more!
Registration and Sponsorships
TopGolf for Bobby Jones CSF
Sunday, October 1, 2023
Unlimited game play, open bar, food, a chance to win $10,000 and more! Sponsored by Dr. Catherine Loughin with proceeds to benefit Bobby Jones CSF.
Fire Maker presents The Calamity Jane Charity Cup benefiting Bobby Jones CSF
Wednesday, October 11, 2023
Bobby Jones Golf Course
Early bird pricing until July 28th!
Tournament, breakfast, lunch, Fire Maker beer, silent auction, awards, party
Dinner Dance for a Cure “In Paris“
Saturday, October 21, 2023
Twinsburg Hilton Garden Inn
Cocktails, dinner, dancing, silent auction
Tickets and sponsorships coming soon
International Night of Light Gala
Saturday, October 28, 2023
Delray Beach, Florida
Tickets and sponsorships
As you may know, Amazon Smile shut down in February. We thank you for choosing Bobby Jones CSF as your charity through this program and as a result, we received over $11,000 from your everyday shopping!
We know you are passionate about Bobby Jones CSF and want to let you know that we are now partnering with the ShopRaise app, which gives a portion back to us whenever you do your normal shopping online at over 1,000 stores like Macy’s, Home Depot, and Walmart.
Please help us support and promote our program by doing these 3 simple things:
Click here to get started. With your help, we can make a difference in the lives of the community we serve!