Bobby Jones Chiari & Syringomyelia Foundation

Join us next week, Orlando! Swing for good... 3 hours of unlimited gaming, buffet, and a chance to win prizes + a tax deduction! igfn.us/form/7lh7uA

@NUCLRGOLF EXACTLY what we said last night😁

When you have a wedge in hand after hitting your best drive of the day 🏌🏻‍♂️😵

This GIVING TUESday... WEEK, we are kicking off funding the 2026 Together We Thrive Summit. Help us raise $10,000 towards the 2026 Together We Thrive Summit: igfn.us/form/UdhL3w . . . Check out last year's - bobbyjonescsf.org/i-am-patient/p… #givingtuesday #givingtuesweek

It's Giving... ANSWERS It's great when doctors and scientists find answers through good research, but are they the answers that will necessarily make a difference for patients? Tell us what you feel is most important as a patient or caregiver! bjcsf.digitalcabinet.org

THANK YOU❗️ Because of your support, we are able to: 👉Advance research collaborations 👉Bring science and clinical care closer together 👉Provide education, events, and resources to thousands of families seeking answers. We wish you a peaceful and joyful Thanksgiving🙏

It's Giving... EDUCATION We want to hear from YOU❗️COMMENT topics or speakers you would be interested to hear from at our 2026 Together We Thrive Summit! 🧠Check out the 2025 lectures HERE: bobbyjonescsf.org/i-am-patient/p… 💜Participate in #GivingTuesWeek HERE: igfn.us/form/UdhL3w

What's YOUR top research priority for Chiari, EDS, or syringomyelia? Our BJCSF Health Prioritization Project needs your 5 min input to guide our next 5 years of research! 👉 bjcsf.digitalcabinet.org #BJCSF #Research #PatientVoice #Priorities

This #GivingTuesdayWeek we are raising $10,000 to go towards our 2026 Together We Thrive Summit! We are dedicated to offering opportunities for patients to come together, learn, and connect with the community. 💜Help us reach our goal - igfn.us/form/UdhL3w

Are you a parent living with Chiari, syringoymelia, EDS, or another related disorder? Your input is urgently needed. Help us focus our programs based on the challenges your family faces everyday. 👉 bjcsf.digitalcabinet.org

Your daily experience is key to future breakthroughs. Our BJCSF Health Prioritization Project needs your input to guide 5 years of research. Take a few mins, make a huge impact! 👉 bjcsf.digitalcabinet.org #PatientVoice #Caregiver #BJCSF #Research

💜 Chiari Awareness Month: Every voice, every gift matters. This month is about ALL of us. Let’s build bridges of advocacy, empowerment, and hope together. 👉 Be part of the change. Support BJCSF: igfn.us/form/UdhL3w Honor patients, caregivers, and novel Chiari research.

Have you participated yet? By sharing what matters most to you and your family, you'll help ensure our work stays focused on the issues that truly impact your loved ones. 👊Just hit the link: bjcsf.digitalcabinet.org 👉Click 'Sign Up' in the top right corner ✅Take the survey

🌊BJCSF and The Monkton Institute are proud to sponsor the International CSF Hydrodynamics Symposium. This meeting consists of surgeons, bioengineers and mathematicians and their work in the hydrodynamics and CSF flow space 🌎Check out the past lectures: bobbyjonescsf.org/i-am-a-researc…

Big congrats 🎉 to Dr. Kelsi Chesney! A resident neurosurgeon at Children's National and the 2024 winner of our award for outstanding research on Chiari and syringomyelia. This peer-voted award helps inspire young doctors to find new breakthroughs. youtu.be/DjQZQ2WNv9g

Patient voices guide our research. Ready to help shape our next 5 years of work? Your input on our new survey will directly guide our research on Chiari malformation, syringomyelia, Ehlers-Danlos syndrome, and related disorders. Take the survey: bjcsf.digitalcabinet.org

HUGE thanks to the Austin crew, Brad Stuver, and @MLSonAir for shining a little light on Chiari and syringomyelia this #ChiariAwarenessMonth Couldn't make it out for corn hole but want to support our mission? 💜Donate as much or as little as you can: igfn.us/form/oDdhFw

Chiari is often accompanied by other disorders including EDS. Nobody knows why! Sharing knowledge and discoveries is so important! At the Together We Thrive Patient Conference, @NorrisLab presented a little bit on some of their ongoing studies: youtu.be/_l0a-KalKFs #Research

🔬Research = Hope for Chiari. Medical research is how we move from awareness to answers. Bobby Jones CSF funds studies, doctor symposiums, and training that lead to earlier diagnoses, better treatments 💜Fuel the science that changes lives. Donate today: igfn.us/form/UdhL3w

Whether you are going through a tough time, celebrating a win, or you just want to connect with others who understand, we are here for you! 🫶igfn.us/form/ZUgvTQ . . . #chiariawarenessmonth #adultsweek #support

🌫Brain fog is one of the more commonly reported symptoms in adult Chiari patients. Dr. Philip Allen gives an overview of his ongoing work, specifically on how cognitive dysfunction and "brain fog" is measured in adult patients with Chiari malformation. youtu.be/UrC84C4wxCY