Bobby Jones Chiari & Syringomyelia Foundation

06/16/2026

We're here for it all!
Adults
Parents
Caregivers

Questions
Tips
Frustrations
Celebrations

Join us in the tough times, times of uncertainty, and best of all, times of relief!
🔗Register HERE: igfn.us/form/NzuUSg

06/13/2026

👋If you're 16-25 years old and dealing with Chiari, EDS, syringomyelia, POTs or anything chronic illness-related, this support meeting is for you!

It's tough navigating the world as a teen and young adult... now throw in dealing with a chronic illness! It can be tough for friends to understand exactly what you're going through and sometimes it's nice to just hang with people who get it.

Log on with us!
🔗Register HERE - igfn.us/form/-cGUWA

06/11/2026

⛳🏌️‍♂️ Golfers, get ready for a day of great golf, friendly competition, and an incredible cause!

Join us for the Play It As It Lies Open benefiting the Bobby Jones Chiari and Syringomyelia Foundation on October 20, 2026 at the legendary Bethpage State Park Red Course in Farmingdale, NY.

🔗Sign Up or Learn More HERE: https://bobbyjonescsf.org/csf-events/2026playitopen/

📍 Location: Bethpage State Park Golf Course | Farmingdale, NY

🕙 10:00 AM – Registration & Breakfast
🏌️ 12:00 PM – Shotgun Start

Enjoy a fantastic day on one of New York's premier golf courses, complete with:
✅ Breakfast
✅ Lunch served on the course
✅ Golf carts included
✅ Exciting contests and camaraderie
✅ Awards Dinner at the Heritage Club at Bethpage

Gather your foursome, reserve your spot, and help make a difference for individuals and families affected by Chiari malformation and syringomyelia.

🏆 Play great golf. Support a great cause. See you on the first tee!

Foursomes, individual playing spots, and sponsorships available! Check it out: https://bobbyjonescsf.org/csf-events/2026playitopen/

06/11/2026

It can be overwhelming consolidating your entire health journey into a few sentences, one 60 seccond TikTok video, or even a book!

A way to start and get your point across is identifying your WHY... and as Christie Cox says, make sure your WHY makes you cry. Your WHY is the HEART of your narrative, it should be filled with emotion and be incredibly meaningful to you. 💙

Find your WHY and use it to empower you to tell your story!

Need some help getting started?
🔗Check out Christie Cox’s six-module writing course to guide you through the process - https://bobbyjonescsf.org/i-am-patient/tell-your-story/

06/11/2026

Dr. David Bauer discusses treatment of craniocervical instability (CC) in pediatric patients with Chiari 1.

Check it out:

Bobby Jones | CSF

06/09/2026

So excited to have Dr. Patel joining us for an in-person ASK THE EXPERT !

🔗Register HERE: https://igfn.us/form/TAqgqQ

Can't join us in person? Email your questions to: [email protected]
This lecture will not be live streamed, however, we do record and share all of our lectures on our website and YouTube channel.

06/03/2026

Have you ever wanted to share your story but you weren’t sure where to start? Or you just felt too nervous to share? We’ve got you covered.

Gain confidence in telling your story using the Crafting Healing Narratives course!
Only six 30-ish minute modules, completely free to help you get your story out there! You never know who it will impact.

Find strength in sharing💪
🔗CHECK IT OUT - https://bobbyjonescsf.org/i-am-patient/tell-your-story/

Missed the live webinar and Q&A we hosted with Christie to launch the course? Find it in the link above👆👆

06/01/2026

CHICAGO! Walk Impact Field with us on JULY 31st 🚶🏽‍♀️

$35 TICKET INCLUDES:
- admission to the game
- food and bev (non-alcoholic)
- baseball cap
- special access to the Leinie Lodge

Buy tickets, raise the money, or donate HERE: igfn.us/form/mHh7PA

❗DEADLINE - Register by July 27th

06/01/2026

Have you checked out the Inside the Lab: A Chiari Community Open House speaker lineup yet? Chiari specialists in a variety of disciplines will be gathering with us on August 8th in Boston!

🔗Join us and Learn more - https://neurobiomechanics.github.io/OpenHouse2026/

Follow Chiari Neurobiomechanics Research Lab !

Free full-day conference on Chiari malformation, syringomyelia, CSF dynamics, and neurobiomechanics. August 8, 2026, Northeastern University ISEC, Boston. Research talks, posters, demos, and patient experience session.