Bobby Jones Chiari & Syringomyelia Foundation

Research Is More Than Discovery—It’s Hope in the Making

Awareness is vital. But for Chiari malformation, syringomyelia, EDS and related disorders, meaningful change only happens when awareness meets rigorous medical research. At Bobby Jones CSF, we’re proud to be leading the charge in turning curious questions into quality clinical care—through comprehensive, forward-looking research initiatives and collaborative meetings with experts in the medical community.

What We’re Doing—and Why It Matters

We are proud to dedicate our primary funding to medical research efforts and collectives to gather the brightest minds in the medical community together to find answers faster. Below are highlights of those ongoing efforts:

• Chiari Clinical Research Consortium (CCRC): We are spearheading the creation of an international research consortium—the Chiari Clinical Research Consortium (CCRC). This multi-institutional collaboration  systematically  collects consistent, diversified patient data, built on standards like our Common Data Elements (CDEs), to enable large-scale, bias-resistant studies that can transform how we diagnose and treat Chiari globally. Over 32 neurosurgeons and more than 60 individuals are directly or indirectly involved with this Consortium so far.
• Standardizing Research Efforts: Standardization is essential. In partnership with the NIH/NINDS, BJCSF developed the first CDEs for Chiari I malformation, paving the way for researchers everywhere to “speak the same language” in data and results. These CDEs and our ongoing Prioritization Project underpin this envisioned international patient registry—a powerful tool for real-world insights and new breakthroughs. Make sure your voice is heard. Participate in our efforts to prioritize the patient voice in our upcoming registry: https://bjcsf.digitalcabinet.org/
• The Chiari Surgical Success Scale (CSSS) Project: Surgical outcomes vary because predicting them is complex. Our CSSS initiative is a groundbreaking, multi-center prospective cohort study designed to forecast surgical success using key clinical and imaging variables—aimed at giving patients and surgeons clearer guidance on treatment planning. For more information: https://bobbyjonescsf.org/csss/
• Annual Excellence in Research Awards: We’re proud to incentivize pioneering work through annual awards such as the AANS/CNS-sponsored “Excellence in Chiari & Syringomyelia Research” award. These recognitions encourage emerging and established investigators to push boundaries in understanding and treating these conditions. Previous award winners include: Vijay Ravindra, MD (2020), Syed H.A. Akbari, MD (2021), Ms. Rachael Han (medical student Y2, 2022), Belinda Shao, MD, MPH (2023), and Kelsi Chesney, MD (2024). You can watch the most recent presentation from Dr. Chesney here: https://youtu.be/DjQZQ2WNv9g
• Think Tank & Research Colloquia: Connection fuels progress. Our yearly Think Tank meeting and Research Colloquium bring together physicians, scientists, and thought leaders to exchange fresh ideas, share recent findings, and spark collaborations that ripple into better patient care. This year’s Research Colloquium is coming up in Los Angeles, CA in October 2025. You can watch videos from this year’s Think Tank meeting and learn more about our research meetings here: https://bobbyjonescsf.org/i-am-a-researcher/bobby-jones-csf-funded-research-2/think-tank-meeting/2025thinktank/

Why September Chiari Awareness Month—and Your Support—Matter Now

Chiari Awareness Month isn’t just about visibility—it’s a rallying cry for action. Research like ours doesn’t happen alone. Every conversation, every study, every award, every standardized data point—all depend on trust, funding, and community participation.

By supporting BJCSF this month, you’re investing in:

• Well-designed, multi-center trials through CCRC
• Standardized data with CDEs and broader insights with patient-centered studies
• Empowering researchers through awards, expert gatherings and events
• Building the platforms and partnerships that bring science to the people who need it most

Join Us—Be the Bridge

Your contribution is more than a gift—it’s part of a wider movement toward better outcomes, clearer answers, and empowered patients. Support research this September. Participate in our Prioritization Project by signing up and taking a brief 5-minute survey. Tell us what matters most to you and your loved ones. Get started here: https://bjcsf.digitalcabinet.org/

Want to do a little bit more? We always need donations from folks who care deeply about these issues. Consider donating today.

Donate to Fuel Discovery

Together, we can make research more inclusive, impactful, and transformational—so that Chiari is no longer invisible, but understood, treatable, and ultimately, conquerable. Because together is how we will get through this. Thank you!