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    SRNA Soundwaves

    SRNA Soundwaves is a podcast network that brings together expert insight, research updates, and experiences from the rare neuroimmune disorder community. Through multiple series, SRNA Soundwaves connects those living with rare neuroimmune disorders, caregivers, clinicians, and researchers with trusted information and meaningful conversations that educate, empower, and inspire. Topics include acute disseminated encephalomyelitis (ADEM), acute flaccid myelitis (AFM), MOG antibody disease (MOGAD), neuromyelitis optica spectrum disorder (NMOSD), optic neuritis (ON), and transverse myelitis (TM).

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    Latest Episodes:
    ABCs of NMOSD 302. NMOSD and Pregnancy/Family Planning Apr 26, 2022
    Show notes

    In this episode of ABCs of NMOSD titled, “NMOSD and Pregnancy/Family Planning,” Dr. GG deFiebre of SRNA was joined by Dr. Anastasia Vishnevetsky and Dr. Tamara Bockow Kaplan. The experts discussed contraception and other factors that are important for people to plan with their neurologists and obstetricians. They talked about the implications of a relapse before or during pregnancy and how to approach certain scenarios. The experts also outlined the benefits and risks of several medications and options for treatment scheduling, symptom management, and MRI preparation. Finally, they described considerations for labor and breastfeeding.


    Ask the Expert 1003. Managing Spasticity with a Baclofen Pump Mar 21, 2022
    Show notes

    Dr. GG deFiebre of SRNA was joined by Dr. Miguel Escalón for an Ask the Expert podcast on "Managing Spasticity with a Baclofen Pump." Dr. Escalón began by giving an overview of spasticity, tone, and treatment options.He explained how the baclofen pump works, its advantages, and the impact on neurogenic bladder and bowel function.Next, Dr. Escalón described the initial surgical procedure, recovery process, and potential risks.Finally, he discussed long-term operation and maintenance, as well as safety measures and how pregnancy might impact thebaclofen pump. You can view this video and transcript on our web site: https://wearesrna.org/resources/managing-spasticity-with-a-baclofen-pump/


    ABCs of NMOSD 301. Pediatric NMOSD | Part 2, Treatment & Symptom Management Mar 07, 2022
    Show notes

    Rebecca Whitney of SRNA was joined by Drs. Jayne Ness and Silvia Tenembaum for an ABCs of NMOSD podcast titled, “Pediatric NMOSD - Part 2, Treatment and Symptom Management.” The experts began by explaining symptoms of pediatric NMOSD. They discussed acute and ongoing treatments, considerations (including vaccines), side-effects, and whether or not aquaporin-4 antibody levels are continuously monitored. The experts also compared and contrasted NMOSD and MOGAD in children. Finally, they provided information on long-term symptom management, repeated MRIs, and indications of a relapse that would require emergency medical care.


    Ask the Expert 1002. The Future of Diagnosing Transverse Myelitis Feb 21, 2022
    Show notes

    For this episode of our Ask the Expert podcast series, "The Future of Diagnosing Transverse Myelitis," Dr. GG deFiebre of SRNA was joined by Drs. Kyle Blackburn, Stacey Clardy, Eoin P. Flanagan, Benjamin Greenberg, Michael Levy, and Carlos Pardo-Villamizar. Dr. Carlos Pardo-Villamizar began by explaining the history of transverse myelitis. The experts then talked about criteria for TM published in 2002 and how the diagnostic process has changed in the past 20 years. They discussed the terminology of TM, how vascular causes of myelopathies change our understanding of diagnosing TM, and changes they foresee to the TM diagnostic criteria and process. Finally, they answered questions from the audience about potential research for treatments or a cure and COVID-19 vaccines.


    Ask the Expert 1001. Study of Transverse Myelitis in Veterans Health Administration Records Feb 14, 2022
    Show notes

    GG deFiebre of SRNA is joined by Drs. Jonathan Galli, Michael Sweeney, and Justin Abbatemarco for an Ask the Expert: Research Edition podcast on the "Study of Transverse Myelitis in Veterans Health Administration Records." The experts begin by explaining the purpose of this research. They also talk about methods they used to conduct this research and the inclusion and exclusion criteria. The major findings are described, as well as how these compare to previous studies. Finally, the experts discuss what this means for those with TM, the future of diagnosing and treating TM, and ways in which physicians and medical experts can be educated in regard to these issues.


    Ask the Expert 913. Avoiding a Misdiagnosis | Understanding the Differences Between MOGAD, MS, and NMOSD Jan 12, 2022
    Show notes

    GG deFiebre, PhD of SRNA was joined by Drs. Geoffrey Eubank and Michael Levy for an Ask the Expert podcast on "Avoiding a Misdiagnosis: Understanding the Differences Between MOGAD, MS, and NMOSD." The experts begin by providing an overview of MOG antibody disease, multiple sclerosis, and neuromyelitis optica spectrum disorder, including the similarities and differences between the disorders. They explain how each of the diagnoses are made, the potential consequences of misdiagnosis, and why a diagnosis might change over time. Finally, the experts discuss current research being conducted and what may be expected in the future for diagnosing these disorders.


    ABCs of NMOSD 210. Insurance and Access to Care in the US Dec 21, 2021
    Show notes

    For this ABCs of NMOSD podcast, "Insurance and Access to Care in the US," SRNA's GG deFiebre, PhD was joined by expert Marissa Shackleton, MS. The expert began by explaining the different types of insurance in the United States and providing an overview of common terms used while discussing insurance policies. She then discussed financial assistance programs and how to navigate medical costs when a person is under-insured or uninsured. Finally, the expert provided information on the process of appealing insurance denials, as well as programs to help afford medication costs.


    ABCs of NMOSD 209. COVID-19 and NMOSD Updates Dec 16, 2021
    Show notes

    GG deFiebre, PhD was recently joined by Dr. Michael Levy for an ABCs of NMOSD podcast on "COVID-19 and NMOSD Updates." Dr. Levy began with an overview of how people with NMOSD have been affected by COVID-19 in comparison to the general population. He then discussed vaccines and the data that has been collected so far on its efficacy in people with NMOSD. Finally, Dr. Levy gave an update on the ongoing research that is being conducted on COVID-19 and people with NMOSD.


    Ask the Expert 912. MOG Antibody Disease | Diagnosis and Treatment Guidelines Dec 07, 2021
    Show notes

    SRNA's Krissy Dilger was joined by Drs. Eoin Flanagan and Rohini Samudralwar for an Ask the Expert podcast on "MOG Antibody Disease: Diagnosis and Treatment Guidelines." The experts gave an overview of the diagnostic tests used for MOGAD and how it is differentiated from other demyelinating conditions. They explain the acute treatments used following an attack, as well as guidelines for ongoing preventative therapies. Finally, the experts discuss research into MOGAD and future considerations for treatment.


    Ask the Expert 911. Temperature Sensitivity and Rare Neuroimmune Disorders Nov 03, 2021
    Show notes

    Krissy Dilger of SRNA was joined by Dr. Gretchen Hawley for an Ask the Expert podcast on "Temperature Sensitivity and Rare Neuroimmune Disorders." Dr. Gretchen began by explaining why people with rare neuroimmune disorders may experience heat and cold sensitivity. She discussed how temperature regulation plays a role and the effects it can cause on someone with a rare neuroimmune disorder. Finally, Dr. Gretchen provided various treatment options and coping mechanisms for temperature sensitivity.


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