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!
Wednesday, October 18th @7:30pm ET– Virtual Ask the Expert featuring Dr. Gerald Grant, Duke University. Dr. Grant 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.
Have a topic of interest? Contact: email@example.com
International Patient Registry. We still need a little more information to complete an analysis of the 5mm Rule and patient surgical outcomes in Chiari treatment. We need to have a few more people complete both the Impact of the 5mm Rule and the Standard of Care & Satisfaction surveys in the international registry. You can complete both surveys in under 5 minutes!
Got a question? Contact Kaitlyn at firstname.lastname@example.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!
External Research Meetings & Events. We will be participating in the 2023 Patient Centered Outcomes Research Institute (PCORI) annual meeting on October 4-5th to stay up-to-date on patient-centered research updates as well as plan future abstract submissions and studies. We also continue to lift up other like-minded organizations and actively contribute the Chiari and syringomyelia perspective to their missions. To accomplish this, we will also be participating in research meetings and events to address issues such as spinal cord injury, paralysis, and connective tissue disorders with the Ehlers-Danlos Society and The Miami Project to Cure Paralysis.
Chiari Surgical Success Scale Update. There are now 10 enrolling sites in this study, with more sites coming on in the beginning of 2024. Over 670 patients have been screened for this groundbreaking study, over 100 are already enrolled and 16 adult and pediatric patients have already finished their data collection! To all the patients, parents, clinicians and researchers who are involved in this work: we are so thankful for your dedication to find answers for patients before they ever set foot into an OR!
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 October, 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.
Fire Maker presents The Calamity Jane Charity Cup benefiting Bobby Jones CSF
Wednesday, October 11, 2023
Bobby Jones Golf Course
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
Are 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!
International Night of Light Gala
Saturday, October 28, 2023
Morikami Museum & Japanese Gardens
Delray Beach, Florida
Welcome reception on Friday, October 27
Gala on Saturday, October 28
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!