Every dollar you donate in support of the Bobby Jones Chiari & Syringomyelia Foundation is put to work exponentially. This page (front and back) highlights the work your donations have made possible in just one calendar year!

Are you a high school or college student interested in different ways to get involved with Bobby Jones CSF? Check out our current youth/young adult ambassadors here. If you are interested in participating in fundraising, advocacy, and awareness programs with Bobby Jones CSF, let’s talk. Contact Cathy Poznik to discuss: cpoznik@bobbyjonescsf.org.

Bobby Jones CSF is heading to the hill.  There is still time to join us.  For the past few years, Bobby Jones CSF has stormed Capitol Hill with you to make a difference for people living with Chiari malformation, syringomyelia, Ehlers-Danlos syndrome and many other related disorders… and it seems like Congress is really listening.

To keep the momentum moving forward, we must continue making our voices heard… Right now, we have the following states represented and would love to include more: Florida, Maryland, Missouri, New Jersey, New York, Ohio, Pennsylvania, Tennesee, Virginia, Rhode Island and South Carolina.

Register here! For additional information, visit our unite@thehill page for more details.  Deadline for hotel reservations is extended to April 12, 2023. Book your hotel room here.

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, April 16th @5pm ET

Adult Support Meeting – Tuesday, April 25th @7pm ET

2023 Think Tank Meeting. BJCSF will host its annual Think Tank meeting on Friday, April 21, 2023 in Los Angeles, California. This meeting brings together neurosurgeons, neurologists, other clinicians and researchers to discuss new research in the areas of Chiari malformation, syringomyelia and related disorders.

The meeting fosters meaningful discussion to improve the quality of care for patients and quality of life for families. Some of the presentations to be discussed this year include topics like real-time CSF flow imaging, Chiari malformation and epilepsy in children, subarachnoid stents to treat syringomyelia and more. Learn more about previous Think Tank meetings on our website.

Craniocervical Instability: Coming to Consensus. Craniocervical instability (CCI) is a controversial issue in the medical field. There are no objective criteria that have been well-established to accurately diagnose CCI every time. Instead, diagnosis is made based on a combination of medical images and symptoms. Each doctor that a patient sees probably has their own idea about what a CCI patient “looks like”. This means that doctors are often left confused by what is published in the medical literature and patients are left disappointed when answers aren’t readily available. BJCSF is sponsoring a Delphi process involving clinicians on either side of this controversy.

The goal is to develop an expert consensus on what can qualify as objective signs, versus important subjective clinical signs of CCI. This will lead to diagnoses of CCI occurring often and accurately. This work will also help improve the research landscape, leading to even more conclusive evidence and answers in the future! The first meeting of this group will take place immediately after the BJCSF Think Tank.

Chiari Surgical Success Scale – Investigator’s Meeting. After the BJCSF Think Tank, there will be a meeting of the principle investigators of the CSSS project. This project is well underway. Over 500 patients have been screened to participate at the four active, enrolling sites. Of the 95 eligible patients, 70 have already agreed to participate in the study! This is very exciting because the project is poised to be the biggest partnership and dataset in Chiari and syringomyelia history. The long-term research opportunity to demystify these disorders is almost endless!

Thank you to all the patients, families and research partners who are making this breakthrough happen in real-time! Learn more about the CSSS here.