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 2024 Annual Fund to keep all of our important initiatives moving forward. Donate here.
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 just last year.
Thursday, February 8th @5:00pm CST– In-Person Lecture featuring Dr. David Bauer, Texas Children’s Hospital. Dr. Bauer will speak on a topic to be announced shortly. 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.
Thursday, February 15th @5:00pm ET– In-Person Lecture featuring Dr. David Limbrick, Virginia Commonwealth University. Dr. Limbrick will speak on a topic to be announced shortly. 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.
Thursday, February 29th @7:30pm ET– Virtual Ask-the-Expert featuring Dr. Mark Proctor. Dr. Proctor will speak on a topic to be announced shortly. REGISTER HERE.
Monday, March 4th @4:00pm PT– In-Person Lecture featuring Dr. Cormac Maher, Stanford University. Dr. Maher will speak on the topic: . 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: mpoppe@bobbyjonescsf.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 and for ADULTS & CAREGIVERS every last Tuesday of the month at 7:00pm ET.
High School/College Support Meeting – Sunday, February 25 @5pm ET
Adult & Caregiver Support Meeting – Tuesday, February 27 @ 7pm ET
Chiari Surgical Success Scale. It’s hard to believe, but this year, the CSSS study is turning three years old at our two longest enrolling sites! We should have some initial results on the first few people enrolled in this study at this time next year.
Currently, there are 14 sites enrolling and 146 incredible patients who have already contributed their valuable information to this work. Thank you to everyone involved in this project– it is truly a labor of love and a testament to how hard the community is willing to work and come together to make a difference– whether those hard working people are patients themselves, their parents, dedicated clinicians or research staffers, there is so much going into this work.
We are hopeful that the CSSS tool will be very useful for so many people in the future… It’s the closest thing we will have to “precision medicine” in Chiari for many years! Learn more about the study here.
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.
Thank you to everyone who participated in the 2023 unite4answers campaign. Because of all of you, we raised $318,000 for unite4answers!
Let’s work together to put at least 50 events on the calendar this year. If you’re interested in learning more about these events, please email Cathy Poznik at cpoznik@bobbyjonescsf.org for details or go ahead and register to be a chairperson below.
New this year… if you think you would like to put an event on the calendar, let me know and I will tell you about our new referral program…you can earn a YETI purple unite4answers tumbler!
REGISTER TO BE A 2024 unite4answers CHAIRPERSON HERE.
…to our 2023 unit4answers sponsors!
Join this list by being a 2024 national sponsor!
Consider becoming a National Sponsor of the 2024 unite4answer events. Your logo or family name will be displayed on the 2024 t-shirt that is distributed to 2,000 people across the country, on the banner at each event and on other printed materials.
Learn more about the national sponsorship levels here.
If you would like to be a unite4answers national sponsor, you may register online to pay by credit card here.
If you would like to send in a check, complete this form and mail to: Bobby Jones CSF, 69-39 Yellowstone Blvd. #216, Forest Hills, NY 11375.
REGISTER TO BE A NATIONAL SPONSOR HERE.
Saturday, March 2
“Sweet 16” Casino Night
Purchase tickets, sponsorship, or journal ad here
Hilton Garden Inn
Staten Island, New York
*Room block closes on February 16, 2024*
Sunday, April 28
TopGolf for Bobby Jones CSF
Purchase tickets soon!
TopGolf Holtsville
Holtsville, New York
*Early bird pricing until April 1, 2024*
SAVE THE DATE
Sunday-Monday, September 8 & 9
Bobby Jones Classic at Sea Island
More information and register here
Sea Island Resort
St. Simons Island, Georgia
Saturday, October 19
Dinner Dance for a Cure
Purchase tickets soon!
Hilton Garden Inn
Twinsburg, Ohio
Saturday, November 23
International Night of Light Gala
Purchase tickets, sponsorship, or journal ad soon!
Sunset Club
Seattle, Washington
