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!

Education

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: mpoppe@bobbyjonescsf.org

Support

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

Research

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:

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