Welcome to our updated 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!


On August 4th @7:30pm ET, Dr. Sunil Patel will speak on the topic of Tethered Spinal Cord Syndrome in Ehlers-Danlos Syndrome: Diagnosis, Treatment and Post-Operative Care at our first IN-PERSON lecture since February 2020! Join us at the Medical University of South Carolina. Register here if you would like to join us in person.

If you would like to view this lecture on a live stream instead, you may do so here: https://youtu.be/SVQ1n58GxJc.


In an effort to stay connected, our monthly virtual support groups will continue into 2021. We hold a support meeting for PARENTS every second Tuesday of the month at 7:00pm ET, ADULTS every last Tuesday of the month at 7:00pm ET, and HIGH SCHOOL/COLLEGE-age usually every third Sunday of the month at 7:30pm ET.

Parent Support Meeting – August 10th @7:00pm ET, hosted by Nancy Feracco (Chapter Chairperson)

High School/College Support Meeting – August 15th @7:30pm ET, hosted by Roman Fenner

Adult Support Meeting – August 31st @7:00pm ET, hosted by Pam Fenner (Secretary of the Bobby Jones CSF Board of Directors)


2021 Think Tank Meeting
This month we are hosting our first research meeting of 2021 in Orlando, Florida ahead of the annual meeting of the American Association of Neurological Surgeons (AANS).
Medical Presentations
The presentations to be given at this year’s research meeting are very exciting! They will include:
  • An update on a recent genetic breakthrough in genetically inherited Chiari;
  • Discussion of a new measurement that might help surgeons understand craniocervical instability (this paper won our 2020 Chiari Award at the Joint Section AANS/CNS Pediatric Meeting!);
  • An entire session dedicated to tethered cord syndrome;
  • And more!
Other Research Agenda Items

At this meeting, we will also meet to discuss the ongoing CSSS project. The NIH/NINDS CDE Working Group will also join us to continue work on the tethered cord syndrome Common Data Elements. This meeting will further refine and improve the tethered cord syndrome CDEs and their application to research!


Congratulations to the Bohon Family (#AlwaysThankful) on the amazing job they did on the first unite@night walk of this year.  A huge shoutout to the Bohon family and friends for raising almost $7,000.

Register as a solo walker and raise at least $50 and we will send you your own “Hope on the Horizon” unite@night t-shirt & light up item.  Raise more money and earn additional recognition prizes. Register here.

Still taking on new walk sites for September, October and November.  To be a chairperson of an in-person walk or virtual walk with your own campaign fundraising module created, please register here and we will be in touch with you to complete the details.

Thank you to our sponsors!


Mt. Pleasant Open: August 6-8, 2021 – Last chance to register for the 2021 Mount Pleasant Open! August 6-8 on the beautiful Patriots Point Links! Register here.

Dinner Dance for A Cure: October 23, 2021 – Tickets and sponsorship opportunities are now available! Help us celebrate in Twinsburg, Ohio with a tribute to Medical and Essential Workers this year. Register here.

Bobby Jones Classic at Winged Foot: October 24-24, 2021 – The field is filling up! Secure your foursome today, foursomes are limited. Register here.

Great Nonprofits

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