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!
This month, our Ask the Expert lecture will feature Dr. Jeffrey Raskin, on Thursday, October 20 at 7:30pm ET. Pediatric Neurosurgeon, Dr. Raskin addresses what to do when your child or loved one is diagnosed with Chiari malformation. Register here.
Have a topic of interest? Contact: email@example.com
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, October 23rd @5pm
Adult Support Meeting – Tuesday, October 25th @7pm
This October is a huge month for research!
The results of the Chiari Clinical Guidelines project will be presented at our annual Research Colloquium meeting. The Congress of Neurological Surgeons invited BJCSF to sit on this working group as a patient advocate. Our organization is the first to ever be asked to participate in the creation of Guidelines alongside the neurosurgical community in this way.
Speaking of, the annual Research Colloquium meeting will be held Saturday, October 8th in San Francisco, California. Presentations at this meeting will range from new genetics findings in Chiari to the understanding of dynamic movements of the brain and mathematical calculations in hydrocephalus. Presenters and attendees include practicing neurosurgeons, neurologists and radiologists and current doctoral students. It is important to BJCSF that we include researchers and practicing clinicians at all levels of experience to nurture a long-standing interest in Chiari, syringomyelia and related disorder research.
In addition to hearing more about research that has already been completed in October, we will also continue working on our ongoing projects. The Chiari Surgical Success Scale principal investigators (PIs) plan to convene a meeting this month to review current progress on data collection. The group will also review and bring on new sites and PIs to join this study and any upcoming projects that we plan to spin off this project. Excitingly, at least two of these new sites will include private practice data, which has been historically excluded from similar research studies.
The FDA-readiness project as part of the BJCSF International Registry is also concluding! We will report back results over this whole month to those who participated and those who follow us on social media! Next month, we also plan to report these and other results at a national conference of professional researchers, continuing to focus on the important aspect of research dissemination.
Thank you to Dr. Catherine Loughin, Long Island Veterinary Specialists, and everyone who participated in the TopGolf event on September 25th!
Fire Maker Brewing Company has chosen Bobby Jones CSF for their monthly “Giving Tap”! They will be raising money for Bobby Jones CSF in their taproom in Atlanta, Georgia for the entire month of October, featuring the Calamity Jane beer, of course. They will also be hosting The Calamity Jane Charity Cup, a golf tournament benefiting Bobby Jones CSF on November 3rd at the Bobby Jones Golf Course. REGISTER and learn more here: linktr.ee/Firemakerbeer > CSF Golf Tournament
“Oktoberfest” Dinner Dance for a Cure
Saturday, October 22, 2022
The 12th Annual Dinner Dance for a Cure “Oktoberfest” on Saturday, October 22, 2022, at the Twinsburg Hilton Garden Inn and we would love your help in making it a success. Although this is an in-person event, the auction will be accessible to everyone online! The evening will be filled with music by Cleveland Keys, Polkas by Dan Wojtila and Mike Wojtila, food, friends, fun and hope as we raise money to find a cure for these debilitating disorders. In addition, there will be a special tribute to Brent Fiorucci for all his dedicated years to this cause.
Please consider a sponsorship, attending or donating an auction basket. Click here for details.
PURCHASE TICKETS, A SPONSORSHIP, OR JOURNAL AD
International Night of Light Gala
Thursday, November 17 – Friday, November, 18, 2022
We will be honoring Dr. Richard G. Ellenbogen and Professor Concezio Di Rocco at the Cercle de l’Union Interallie, in Paris, France on Friday, November 18th with a pre-Gala event on November 17th. Purchase tickets, a research sponsorship, or be an event underwriter.
Bobby Jones Classic
Sunday, March 26 – Monday, March 27, 2023
OUR NEW 2023 BOBBY JONES CLASSIC WEBSITE IS NOW LIVE. Secure your playing spots or sponsorships now!
The 2022 unite@night events are under way! Thank you so much to everyone who has registered to host or participate in a unite@night event. We are so excited that we have already raised over $200,00 for this year. It was a stellar month and we thank everyone who is helping to make a difference by participating in the unite@night (or day) events. Special shout out to The Guettler Family who has helped to raise over $100,000 for the Vero Beach, FL unite@night walk. Another shout out to our youngest unite@night chair, Noah Forman, who has raised close to $38,000 for the Boca Raton, Florida.
Thank you to the 2022 National unite@night Sponsors: The Mikula Family, The Guettler Family, ENPAC & The Bohon Family. We appreciate you so much!!
Check out all the walk sites at this link: https://bobbyjonescsf.org/unitenight/2022-walk-sites/.If there is not a walk in your area, you can still be a part of the fun by registering for a solo walk. Just register here. Fundraise at your convenience and you can earn a t-shirt and other recognition prizes, depending on how much you raise. The funds raised from the unite@night walks help fund research, programs that educate, and online support groups.
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