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!


This month, our Virtual Ask the Expert lecture will feature JR Bucklin, on Thursday, November 3 at 7:30pm ET. Physical Therapist, Mr. Bucklin will speak on the topic of “Physical Therapy for the Hypermobile Patient: A Personalized Journey.” Register here.

We will also be holding an in-person educational lecture in Charleston, South Carolina, on Monday, November 7 at MUSC, featuring Dr. Daniel Scott. Dr. Scott will be addressing “Ankle Instability With Ehlers Danlos Syndrome.” At 5:00pm, there will be a patient-to-patient discussion group and the lecture will begin at 6:30pm. Register here.

Have a topic of interest? Contact:


We hold a support meeting for those who are HIGH SCHOOL and COLLEGE aged every last Sunday of the month at 5:00pm ET, for ADULTS every last Tuesday of the month at 7:00pm ET, and for PARENTS and CHILDREN quarterly, on the second Tuesday of the month.*

The Children’s support meetings will take place just prior to the Parent’s meetings, at 6:30pm ET. A parent or caregiver must be present with the child at the children’s meetings. Registration is part of the Parent’s registration (there is an extra question to answer regarding whether you will be attending the child’s meeting at 6:30pm)

High School/College Support Meeting – Sunday, November 27 @6pm (note the time change)

Adult Support Meeting – Tuesday, November 29th @7pm


We Are Presenting Research That You’ve Made Possible…

We recently completed an initial analysis for the FDA-readiness project, identifying the major symptoms to be targeted for future FDA-approved treatments in Chiari, syringomyelia and related disorders. We plan to present these findings and our methodology at the American Public Health Association’s annual meeting on Tuesday next week with our partners at LunaDNA. We expect to complete more complex analysis and then write a paper to submit for publication to add to the existing medical literature in these disorders. We are also completing analysis for our other, ongoing International Patient Registry studies. Make sure you are registered and participating in these studies here.

The Chiari Surgical Success Scale Project is Growing…

There is a lot of interest in the CSSS study. Last month, we sent invitations to 13 additional sites to join the Chiari Surgical Success Scale– and an additional four are still in discussions! Over the coming months, these new sites will be onboarded and included in this research. The sites invited to join in this past round include:

  • Dayton Children’s Hospital | Dayton, Ohio, USA
  • Macquarie University | Sydney, Australia (International)
  • Johns Hopkins All Children’s Hospital | St. Petersburg, Florida, USA
  • Johns Hopkins University | Baltimore, Maryland, USA
  • The Mayfield Clinic | Cincinnati, Ohio, USA
  • Metropolitan Neurosurgery Group | Silver Spring, Maryland, USA (Private Practice)
  • Michigan Head & Spine Institute | Detroit, Michigan, USA (Private Practice)
  • Medical University of South Carolina | Charleston, South Carolina, USA
  • New York University | New York, New York, USA
  • Texas Children’s Hospital | Houston, Texas, USA
  • University of Washington | Seattle, Washington, USA
  • University of Wisconsin | Madison, Wisconsin, USA
  • Wake Forest University | Winston-Salem, North Carolina, USA

These sites will be added to this study in addition to the existing other sites which have already screened over 200 patients:

  • Colorado Children’s Hospital | Aurora, Colorado, USA
  • University of Alabama | Birmingham, Alabama, USA (actively recruiting)
  • University of Michigan | Ann Arbor, Michigan, USA
  • University of Utah | Salt Lake City, Utah, USA (actively recruiting)
  • Washington University St. Louis | St. Louis, Missouri, USA

This is huge. The study will include data from academic and private practice clinicians, as well as national and international patients. All of the study data will be patient-focused at all times. Learn more about the study here.


Thank you to all who attended and participated in this year’s Dinner Dance for a Cure. We had a fabulous evening filled with great friends, food and music. It was a special evening with a tribute to our dear friend and Bobby Jones CSF supporter, Brent Fiorucci, recognizing the 2022 Shining Star – Noah Forman and hearing from Nicole Turk as she shared her daughter, Nicole, journey with these disorders. Thank you to our 2022 Sponsors: Dr. Krystal Tomei and Dr. Brian Rothstein, The Hutnik/Miller Family, ENPAC/Tim Reed, National Development Council, A. Ripepi & Sons Funeral Home and the Shipley, Bard & Knapp Families.

Save the date 10/21/23 for the Dinner Dance for a Cure “in Paris” at the Twinsburg Hilton Garden Inn.

International Night of Light Gala
Thursday, November 17 – Friday, November, 18, 2022
Paris, France

We will be honoring Dr. Richard G. Ellenbogen and Professor Concezio Di Rocco at the Cercle de l’Union Interallie, in Paris, France on Friday, November 18th with a pre-Gala event on November 17th. Purchase tickets, a research sponsorship, or be an event underwriter.

Casino Night (Night at the Races)
Saturday, March 4, 2023
Staten Island, New York

Bobby Jones Classic
Sunday, March 26 – Monday, March 27, 2023
Atlanta, Georgia
OUR NEW 2023 BOBBY JONES CLASSIC WEBSITE IS NOW LIVE. Secure your playing spots or sponsorships now!

The Calamity Jane Charity Cup Benefiting Bobby Jones CSF
March 29, 2023
Bobby Jones Golf Course
Atlanta, Georgia


Thank you to everyone who has been participating in the 2022 unite@night events. We’ve raised almost $225,000 this year. We’re ending the unite@night event season this weekend with two walks – Richmond, VA and Atoka, TN. The recognition prizes are being ordered and you will receive any items you earned in the next few weeks. Look for the sign-up form for the 2023 unite@night events coming out in December!

Shop Amazon for the holidays and Support Bobby Jones CSF!

Thanks to you for shopping at or with AmazonSmile turned on in your Amazon shopping app! Your everyday purchases have generated over $11,000 in donations to Bobby Jones CSF!!

Shop right now by clicking the picture below and AmazonSmile will donate a portion of your proceeds back to Bobby Jones CSF at no additional cost! You can do good just by purchasing items you already need!

If you remember to go to AmazonSmile first, every time you shop, that’s awesome! For most people, the best thing to do is add a browser extension that automatically redirects you.

For Google Chrome, check out Smile Always.

For Firefox, check out Smile Redirect.

For Safari, check out KeepOnSmiling. These extensions will automatically redirect you to your page every time, so you will never need to remember to go to first!