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 are one of the first winners of a 2023 Top-Rated Award from GreatNonprofits! Read inspiring stories about us here and add your own!
Thursday, November 2nd @7:30pm ET– Virtual Ask the Expert: What’s New in Tech Series featuring Ryan Myers, CEO & Co-Founder & Kristian DiMatteo, COO & Co-Founder, CranioSense. Ryan and Kristian will speak on the topic “IPASS from CranioSense: Non-invasive ICP Measurement.” 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
Attendance at Health Professional Meetings. Bobby Jones CSF will be attending and participating in at least 3 professional meetings this month to bring the patient voice to the national stage. We will be participating in a meeting with the FDA concerning Ehlers-Danlos syndrome, attending and participating in the 2023 American Public Health Association meeting and participating in and hosting satellite meetings at the 2023 annual meeting of the AANS/CNS Joint Section on Pediatric Neurosurgery. We are grateful we are able to continue to bring the patient voice to the national professional world and keep medical and health sciences patient-centered to improve the experiences of families dealing with Chiari, syringomyelia and related disorders.
Chiari Surgical Success Scale. We are continuing to enroll and collect data for the CSSS study. We have over 100 patients enrolled as of November 1st!
International Patient Registry. We are always enrolling and looking to expand the international patient registry for patients living with Chiari malformation, syringomyelia and related disorders. Please consider completing the 5mm Rule survey and the Patient Satisfaction survey, as we intend to close these surveys at the end of this year and complete our analysis! Each survey only takes 1 minute to complete!
Chiari Clinical Guidelines. The goal of neurosurgical guidelines is to provide guidance on what should be the standard-of-care in Chiari neurosurgical care, based on what is already known in the medical literature. For instance, in terms of diagnosis, the guidelines indicate what radiological images and measurements are most helpful… as well as identifying other clinical tests that may be helpful in appropriate diagnosis— such as sleep studies. The results of this work and the guidelines themselves were published in the journal Neurosurgery here, here and here! We will post more about the guidelines all month!
Chiari Practice Parameters. Unfortunately, what became very clear during the guidelines was just how poor the quality of evidence is in the existing medical literature. The final guidelines developed are not strong in their recommendations… So, to offer better guidance in the meantime (while stronger evidence can be generated by projects like the CSSS) we are working with the Congress of Neurological Surgeons to develop something called practice parameters that can go further than the Guidelines are able to by including expert opinions. We just closed the initial survey and we are planning to host the first meeting of this workgroup again in early 2024 with Dr. David Bauer, new SEA Board Member and surgeon at Texas Children’s.
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.
Our unite4answers November and December events…
See all the event locations 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 a 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. Incentive prizes are currently being ordered and if you earned any, you can expect to receive them in the next few weeks!
SAVE THE DATE FOR OUR MAJOR 2024 EVENTS!
March 2, 2024
Hilton Garden Inn, Staten Island, New York
September 8, 2024
Bobby Jones Classic
Sea Island Resort, St. Simons Island, Georgia
October 2024 – Date TBA
Dinner Dance for a Cure
Hilton Garden Inn, Twinsburg, Ohio
November 23, 2024
International Night of Light Gala
Sunset Club, Seattle, Washington
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!