SRNA Soundwaves

The Siegel Rare Neuroimmune Association (SRNA) is joined by Priya Duggal, PhD, MPH to discuss the Genetic Study of Acute Flaccid Myelitis (AFM) being conducted at Johns Hopkins. Dr. Duggal discusses the eligibility of participants for the study, the process for how to enroll, and what to expect as a participant. She also discusses what researchers are hoping to learn about the genetic aspect of AFM and how it will inform the way AFM is treated. Finally, Dr. Duggal describes the processes she uses to keep genetic and other personal information secure, so that the information will never be used against participants. To enroll in the Johns Hopkins Genetic Study of AFM, email Dr. Duggal at [email protected].

The TMA is joined by Dr. Jonathan Cheng from Children’s Medical Center and UT Southwestern Medical Center and Dr. Mitch Seruya Children’s Hospital Los Angeles. The surgeons discuss nerve transfers and how they are used for individuals with AFM. They talk about risks of surgery as well as the post-surgery recovery process. Dr. Cheng and Dr. Seruya also discuss the role of insurance in covering nerve transfer surgery, and they talk about upcoming research publications.

The TMA is pleased to be joined by surgeons Dr. Amy Moore from Washington University School of Medicine and Dr. Dan Zlotolow from The Shriners Hospital for Children Philadelphia and Greenville, The Philadelphia Hand to Shoulder Center, and The Hospital for Special Surgery in New York. The doctors discuss the purpose of nerve transfers in patients with acute flaccid myelitis (AFM) and what the surgery entails. They discuss what qualifications they look for in a candidate for nerve transfer. Dr. Moore discusses nerve decompression and how she determines if a patient could benefit from this type of surgery. Dr. Zlotolow discusses phrenic nerve damage and restoring respiratory function in individuals with AFM.

The TMA is joined by Dr. Eoin Flanagan, Associate Professor of Neurology and Consultant in the departments of Neurology and Laboratory Medicine and Pathology at the Mayo Clinic (Rochester, MN). Dr. Flanagan defines different imaging techniques and discusses how imaging is used to diagnose rare neuroimmune disorders. He discusses what imaging results can tell us about prognosis and the likelihood of developing multiple sclerosis. He provides guidelines for how often to get new MRIs after an inflammatory event, and what new imaging can tell you about your condition. Finally, research and the future of imaging techniques is discussed.

The TMA is joined by Dr. Nicholas L. Zalewski from Mayo Clinic and Dr. Olwen Murphy from Johns Hopkins University to help our listeners better understand spinal cord strokes and other vascular myelopathies. Definitions of spinal cord stroke and vascular myelopathy were given. The experts explained the similarities and differences of spinal cord stroke and transverse myelitis. Signs and symptoms of spinal cord stroke were discussed, as well as diagnostic criteria and treatment. The experts also discussed long-term symptom management and prognosis of individuals diagnosed with spinal cord stroke, as well as the importance of rehabilitation.

The TMA is joined by Dr. Janell Routh and Dr. Manisha Patel from the Centers for Disease Control and Prevention, as well as Dr. Benjamin Greenberg from University of Texas Southwestern Medical Center, to discuss the role of CDC in Acute Flaccid Myelitis (AFM) surveillance. The history of the CDC’s response to AFM is discussed. The medical experts explain the difference between polio and AFM. The experts also give a detailed explanation for the current state of reporting of AFM to CDC. A new consult portal was recently developed by the TMA in collaboration with CDC and physicians at UTSW and Johns Hopkins, and more information is given on this new tool. The CDC officials also discuss plans for follow-up of AFM patients. The experts give an overview of the current research being conducted on AFM and how it will inform future treatment. 

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