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.
We’re excited to partner with Dr. Frank Loth and the team at Northeastern University on groundbreaking research to better understand and treat Chiari and related disorders. Through this project, patients and families will have opportunities to participate in research, connect with experts, and build community through special events and educational programs.
DATE:
Monday, July 6, 2026
TIME:
5:00pm Patient to patient discussion group
6:00pm Break
6:30pm Lecture
EXPERT SPEAKER AND TOPIC:
Dr. Sunil Patel – TBA
LOCATION:
Medical University of South Carolina, 68 President Street, Bioengineering Building, Room 112, Charleston, SC 29403
__________________________________________________________
Presented by Bobby Jones CSF in collaboration with Northeastern University’s Chiari NeuroBiomechanics Research Lab
DATE:
Saturday, August 8, 2026
TIME:
8:00am – 5:00pm
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. This month’s meetings are…
High School/College Support Meeting – Sunday, June 28, 2026 @ 5pm ET
Adult/Caregiver Support Meeting – Tuesday, June 30, 2026 @ 7pm ET
Patient Empowerment Interest Group. Your journey is more than a diagnosis… it’s the missing piece to better care. 🧩 We’re actively looking for members for our Patient Empowerment Interest Group to help us.
🎯 Guide us on which research projects get funded.
🛠️ Create practical tools for daily symptom management.
🗣️ Ensure care remains rooted in the actual patient experience.Low pressure, high impact. You choose your level of involvement based on your energy and schedule. 👉 Apply to join the group here: https://forms.gle/Le7KupMiiJraACJx6
Preview: 2026 Think Tank Meeting. Our annual Think Tank returns this April! Beyond our strategic research planning sessions, we are thrilled to host groundbreaking presentations from leaders in the field. Here is a sneak peek at what’s on the agenda:
We are committed to bringing the brightest minds together to turn these insights into better care for patients living with Chiari, syringomyelia and related disorders.
On June 14, we kicked off the first unite4answers event of 2026. Doylestown, PA held their first annual 5k run/walk and 1mi walk and raised over $26,000 with over 330 participants. It was an amazing day! Thank you Doylestown! VIEW THE DOYLESTOWN, PA PHOTOS HERE.
You can still participate in 2026 unite4answers and earn this year’s t-shirt. Just reach out to Cathy at cpoznik@bobbyjonescsf.org and we will figure out the best way to have you participate.
Next up, we will be heading to Chicago for their 2026 unite4answers event on Friday, July 31st. Here’s the link to register and join us: https://igfn.us/vf/26chicagoil.
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!
TOPGOLF ACROSS AMERICA
Join us for unlimited game play for three hours, all you can eat buffet, and a chance to win prizes. Click below for more details and to register. KEEP AN EYE OUT FOR A LOCATION NEAR YOU!!
Sunday, August 23 – Baltimore, Maryland
Sunday, September 20 – Mobile, Alabama
Thursday, October 1 – Charleston, South Carolina
SATURDAY, AUGUST 8
Inside the Lab: A Chiari Community Open House
Presented by Bobby Jones CSF in collaboration with Northeastern University’s Chiari NeuroBiomechanics Research Lab
Northeastern University
Boston. Massachusetts
REGISTER HERE
SATURDAY, OCTOBER 17
Dinner Dance for a Cure
Hilton Garden Inn
Twinsburg, Ohio
REGISTRATION COMING SOON
TUESDAY, OCTOBER 20
“Play it as it Lies” Open for Bobby Jones CSF
Bethpage State Park
Farmingdale, New York
REGISTER HERE
SATURDAY, OCTOBER 31
International Night of Light Gala
The Metropolitan Club
Washington, DC
REGISTER HERE
