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!
IN PERSON EDUCATIONAL LECTURE
Tuesday, October 15, 2024
Texas Children’s West Campus
18200 Katy Fwy
Houston, TX 77094
Rooms: WH – 01A (WC.150.10); WH – 01B (WC.150.20)
5:30pm Registration
5:45pm Peer to peer support and refreshments
6:00pm Lecture
Expert: Dr. David Bauer
Topic: “Chiari Malformation: What should I know as a patient?”
Have a topic of interest? Contact: mpoppe@bobbyjonescsf.org
Are you looking for support but maybe aren’t ready for a face-to-face group meeting yet? Maybe the timing of the meetings aren’t good for you? You can join our online support group on Inspire.com – Chiari & Syringomyelia Unite.
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.
Adult & Caregiver Support Meeting – Tuesday, October 22 @7pm
High School/College Support Meeting – Sunday, October 27 @5pm
2024 BJCSF Research Colloquium. Each year, the BJCSF hosts 2 research meetings, one in the spring and another in the fall– the Research Colloquium. The purpose of the Colloquium is to disseminate recently published research and discuss therapeutic and clinical implications in pediatric and adult populations living with Chiari, syringomyelia and related disorders. This year’s meeting is being held on Sat, Sept 28th in Houston, Texas.
Below are a few of the lectures scheduled…
Check out previous Colloquia meeting information on our website.
Continuing Education Credits. This year marks the first year we will be offering AMA PRA Category 1 Credits (CMEs) for one of our research meetings. Thanks to our joint provider, Baylor College of Medicine, attendees (in person or virtual) will be able to claim up to 6.25 hours. If you are a physician in need of CMEs, please contact Kaitlyn for more information.
Chiari Surgical Success Scale. We’re excited to announce that 232 patients have already been enrolled in the CSSS study! About one quarter of those participants have finished all the study questionnaires. Two additional sites have begun enrolling their patients, as well! Stanford University in Palo Alto, California and Macquarie University all the way over in Sydney, Australia. Learn more about the CSSS study on our website.
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.
Check out the current lineup for the 2024 unite4answers events here. If you are interested in helping out but cannot put together an in-person event, please consider participating in a solo walk. Just complete this form and select solo walk from the drop-down menu. A customized fundraising link will be sent to you that you can share with family and friends. AND you can earn a t-shirt and other incentive prizes based on what you raise! See attached incentive prizes here.
A huge shout out and thank you to the 2024 unite4answers National Sponsors. We appreciate your commitment to help make a difference for the millions of families affected by these disorders.
We would love to have event attendees send in the unite4answers coloring pages. Feel free to download the pages here and make sure to send in a copy so we can add them to the Facebook Bobby Jones CSF coloring book photo album.
If you are interested in helping out and cannot put together an in-person group event, please consider participating in a solo walk. Just complete the information here and indicate “solo walk” in the comments section of the form. A customized fundraising link will be sent to you that you can share with family and friends. You can also earn the 2024 t-shirt and other incentive prizes based on what you raise. See incentive prizes here.
Bobby Jones CSF is committed to helping the over 3.5 million people in the United States, and my more worldwide, who are living with Chiari malformation, syringomyelia, and related disorders. Our fundraising supports the organization’s critical research initiatives and provides comprehensive support services and educational programs to everyone affected by these disorders. Join us at an event near you!
Saturday, October 19
Dinner Dance for a Cure
Purchase tickets, sponsorship, or journal ad here
Hilton Garden Inn
Twinsburg, Ohio
Friday, November 8 – Sunday, November 10
Mt. Pleasant Charity Open
Registration and Sponsorships here
Patriots Point Links
Mt. Pleasant, South Carolina
Saturday, November 23
International Night of Light Gala
Purchase tickets, sponsorship, or journal ad here
Sunset Club
Seattle, Washington
