bobby jones csf news

JANUARY 2025

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 2025 Annual Fund to keep all of our important initiatives moving forward. Donate here.

We can’t do it without you!

IN PERSON EDUCATIONAL LECTURE

Monday, February 3, 2025
4:30-6:30pm PT

Location:
Stanford Center for Academic Medicine
Meeting Room: Grand Rounds
453 Quarry Road
Palo Alto, CA 94304

Expert Speakers:
Dr. Cormac Maher
Long Term Health with Chiari MalformationDr. Eric Jackson
Answers to Common Questions about Chiari Malformation

REGISTER HERE

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.

High School/College Support Meeting – Sunday, January 26 @5pm ET

Adult/Caregiver Support Meeting – Tuesday, January 28 @7pm ET

Chiari Surgical Success Scale – By the end of 2024, there were 1,567 patients screened for the CSSS study. Of the 306 eligible for the study, 258 enrolled and 80 participants (30%) have already completed their final assessments. Two new participating sites should be ready to enroll by February 2025. Big things are coming to this project over the next year, and we are excited for those changes to be made.
Upcoming research plans. We have major plans for our research efforts in 2025. We will be beginning a consensus effort for cranio-cervical instability in adult patients, continuing our CSSS study with new participating sites, engaging in additional projects that our partners initiate to better understand Chiari, syringomyelia and related disorders.

Thank you so much to everyone who participated our 2024 unite4answers event. We appreciate everyone who was able to be a part of this wonderful community!

This year, we raised almost $350,000 from our unite4answers events and we have you to thank!! Stay tuned for the 2025 unite4answers chairperson registration coming soon!

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.

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!

SAVE THE DATE FOR OUR 2025 EVENTS!!

Saturday, March 1
Casino Night – Honoring Paul Farrell, Bobby Jones CSF Chair Emeritus

Hilton Garden Inn
Staten Island, New York

Saturday, October 18
Dinner Dance for a Cure

Hilton Garden Inn
Twinsburg, Ohio

Keep an eye on our Events Calendar for more to come!