It is central to Bobby Jones CSF’s mission to not only educate patients and their families, but also the medical and allied health professionals who will treat them about Chiari, syringomyelia and related disorders.
To help better educate professionals, Bobby Jones CSF has developed the Consider Chiari campaign to better inform clinicians about best practices in diagnosis and care, improved treatment methods, and emerging research in the field that can help them in their clinical practices.
A majority of these seminars offer Continuing Medical Education (CME) credits. Most medical doctors in the U.S. and abroad are required to collect a certain number of CME credits every year to ensure they stay up-to-date on the latest about the medical issues they treat. To entice more medical professionals to participate in educational programming about Chiari malformation, syringomyelia and related disorders as far-ranging as Ehlers-Danlos syndrome to mast cell activation disorder, Bobby Jones CSF ensures that most of these Consider Chiari seminars offer CME credits to attendees.
Through no fault of their own, many medical professionals are only vaguely acquainted with Chiari and the methods that exist to treat it. Some estimates say that it can take a patient an average of 6 years to recieve a proper diagnosis of Chiari malformation. Bobby Jones CSF wants to help change this.
The objective of the Consider Chiari seminar series is to spark awareness, putting Chiari and related disorders on the radar of more medical professionals and to increase the likelihood that patients’ needs will be met. We want people to Consider Chiari.
The situation in the U.K. for those living with Chiari malformation and cervical instability has been extremely challenging, with delays in diagnosis, lack of access to MRI imaging, treatment and care, and many needing to self-fundraise to travel abroad for surgery.
Bobby Jones CSF was delighted to partner with The Ehlers-Danlos Society bringing together experts from around the world to talk about the current knowledge and understanding in surgical and conservative management recommendations for hypermobile patients. Both organizations were honored to bring their experience to London at The Royal Society of Medicine on September 13, 2019.
Video presentations of this meeting are available to the public as part of our Educational Lecture Series.
The participants in this meeting worked to produce a consensus document based on the presentations and discussions of the day.
A subsequent Letter-to-the-Editor was also published in the journal, Clinical Rheumatology, leading to a response by the authors of another paper.
Both publications can be read here:
We hope that this and our other Consider Chiari efforts encourage a way forward for patients living with these conditions in the UK and abroad.
If you can, donate to support the Consider Chiari educational fund. Your gift will help educate healthcare providers as well as families of patients to recognize the signs and symptoms and understand the best treatments.
A gift of $25 educates 1 medical professional at a Consider Chiari seminar.
If you can’t donate, you can still help grow this program. Introduce us to your doctor, or have them reach out to us to set up a Consider Chiari seminar in their local area.
If you are a medical professional and would like to host a Consider Chiari Grand Rounds or CME-accredited seminar at your institution, feel free to contact us!
Learning more about the program, as a patient or as a medical professional helps to advance this movement!
Previous Consider Chiari seminars are available to watch as part of the Bobby Jones CSF Educational Lecture Series. Consider sharing these videos with doctors, nurses, and other professionals and learning more about these conditions yourself by watching.
MUSC Grand Rounds: Mast Cell Activation – Anne Maitland, MD, PhD (CME)
London Symposium: Welcome & Opening Remarks (CME)
London Symposium: Grabb-Mapstone-Oakes Metric & Measurement (CME)
London Symposium: Epidemiology of Ehlers-Danlos Syndrome (CME)
London Symposium: Clinical Case Presentations of Cranio-Cervical Instability (CME)
London Symposium: The Case for Addressing Cranio-Cervical Instability (CME)
London Symposium: Manifestations of Dysautonomia in Ehlers-Danlos Syndrome (CME)
London Symposium: Causality, Treatment & Outcomes of Cranial Instability: A Clinical Perspective (CME)
Annual Cerebrospinal Fluid Disorders Symposium at Brown University – Various Events & Speakers (CME)
Chiari Malformation: The Simple Gets Complicated at Johns Hopkins – Mark G. Luciano, MD, PhD
Chiari Malformations: An Overview – Violette Recinos, MD (CME)
Treatment of Chiari Malformations & Special Considerations – Krystal Tomei, MD, MPH (CME)
Complex Chiari Malformation – Tsulee Chen, MD (CME)
Syringomyelia – Charl Vorster, MD (CME)
Chiari Malformation & Syringomyelia at UNC Chapel Hill – Gretchen Delametter, CPNP-AC
Consider Chiari Grand Rounds at Lutheran General in Chicago – John Ruge, MD (CME)
