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 2023 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 in just one calendar year.
DINNER DANCE FOR A CUREAre you interested in sponsoring or purchasing tickets or a journal ad for the 2023 Dinner Dance for a Cure “in Paris” on Saturday, October 21st in Twinsburg, Ohio? Click here.
In addition, we are now collecting items for auction and raffle baskets. If you can help out at all or if you need more information, please contact Cathy Poznik at (330) 573-5560. Hope to see you there!
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 August 2023 events are as follows:
Saturday, August 12th in Cedar Rapids, Iowa – 9:00 am
Sunday, August 20th in Chicago, Illinois – 1:30 pm
Please see the flyers (at left) or see 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.
Thursday, August 24th @7:30pm ET– Virtual Ask the Expert featuring Mark Geiger, VP Sales & Marketing, Anuncia Medical Inc. Mr. Geiger will speak on the topic of ReFlow Technology. 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, 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, August 27th @5pm ET
Adult Support Meeting – Tuesday, August 29th @7pm ET
International Patient Registry:. We’re hopeful to present some work at upcoming research meetings about general patient satisfaction, but we need a little more information… We want to see if there is any real statistical relationship between the “5mm rule” and overall satisfaction of neurosurgical care in Chiari treatment. We can only do that if we have enough people who have completed both the Impact of the 5mm Rule and the Standard of Care & Satisfaction surveys in the international registry. The good news is, you can complete both surveys in under 5 minutes! Get started here.
Got a question? Contact Kaitlyn at kesposito@bobbyjonecsf.org with any questions about our international patient registry. You can also contact Kaitlyn to tell us more about what you want us to study using the registry in the future. Thank you for being key to a cure!
Chiari Surgical Success Scale. The CSSS study is still underway, with 103 patients enrolled in the study so far! Just under 10% of the enrolled patients are already done contributing their data to the study. We are very grateful for the patients and parents who have agreed to take part in this research to provide better medical evidence and find better answers for the families affected by these disorders– thank you!
Cabs for Chiari
Saturday, September 16, 2023
DeLille Cellars
Woodinville, WA
Wine, food, music, silent auction
Purchase tickets
Donate
TopGolf for Bobby Jones CSF
Sunday, October 1, 2023
TopGolf Holtsville
Holtsville, NY
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.
Registration
Fire Maker presents The Calamity Jane Charity Cup benefiting Bobby Jones CSF
Wednesday, October 11, 2023
Bobby Jones Golf Course
Atlanta, GA
Tournament, breakfast, lunch, Fire Maker beer, silent auction, awards, party
Individual registration
Foursome registration
Dinner Dance for a Cure “In Paris“
Saturday, October 21, 2023
Twinsburg Hilton Garden Inn
Twinsburg, Ohio
Cocktails, dinner, dancing, silent auction
Purchase tickets, sponsorships or journal ad here
Invitation (PDF)
International Night of Light Gala
Saturday, October 28, 2023
Morikami Museum
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!
