Shows
Ask the Expert1308. Parenting is Hard | Part 4At the end of this mini-series, we will host a Q&A episode where Barbara will answer questions from the community. To submit your question, please visit https://srna.ngo/submitIn the fourth part of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Krissy Dilger of SRNA continued her conversation with Barbara Babcock. In this episode, Barbara, a family therapist, discussed her research of parental fatigue and limited time distribution among families of children who have been diagnosed with a rare neuroimmune disorder. She elaborated on the non-stop nature of caregiving roles an...2025-07-2826 min
Ask the Expert1307. Parenting is Hard | Part 3At the end of this mini-series, we will host a Q&A episode where Barbara will answer questions from the community. To submit your question, please visit https://srna.ngo/submitIn the third part of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Krissy Dilger of SRNA was joined by Barbara Babcock to further explore her research concerning the changing beliefs around parenting when a child has been diagnosed with a rare neuroimmune disorder. Barbara discussed how beliefs around being fair as a parent could change and the various sub-themes supporting this ide...2025-07-2129 min
Ask the Expert1305. FES 101In this episode of "Ask the Expert," Dr. Matthew Bellman joined Dr. GG deFiebre of SRNA to explain the basics of functional electrical stimulation (FES) and its applications. Dr. Bellman outlined how FES differs from other electrical stimulation techniques and its role in improving mobility for those with neuroimmune disorders [00:03:35]. He discussed the specific benefits of FES, including muscle strengthening and managing spasticity, and shared success stories demonstrating its impact [00:09:53]. Dr. Bellman also highlighted new developments in FES technology, particularly the integration of AI [00:33:28].Matthew Bellman, PhD is a Founder and the Chief Technology...2025-07-0840 min
Ask the Expert1304. Parenting is Hard | Part 2At the end of this mini-series, we will host a Q&A episode where Barbara will answer questions from the community. To submit your question, please visithttps://srna.ngo/submitIn the second part of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Barbara Babcock shared more about her research on how parents navigate the needs of their non-diagnosed children alongside those of a child with a rare neuroimmune disorder. She described the demographic details of the participating families and the process of recruiting participants for the study [00:02:25]. Barbara highligh...2025-06-3014 min
Ask the Expert1303. Parenting is Hard | Part 1At the end of this mini-series, we will host a Q&A episode where Barbara Babcock will answer questions from the community. To submit your question, please visit:https://srna.ngo/submitIn the first part of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Barbara Babcock discussed the challenges faced by parents raising a child with a rare neuroimmune disorder and the impact on non-diagnosed siblings. Barbara shared her personal journey with transverse myelitis (TM) and how it led her to conduct research on this topic [00:02:20]. She explored themes from her...2025-06-2329 min
Ask the Expert1302. Pelvic Floor Therapy for Bladder and Bowel ManagementKrissy Dilger of SRNA moderated this "Ask the Expert" episode, “Pelvic Floor Therapy for Bladder and Bowel Management,” featuring Jessica Ekberg, a certified pelvic floor therapist. Jessica explained the various conditions treated by pelvic floor therapy, emphasizing the importance of posture and breathing [00:01:05]. She discussed how pelvic floor therapy is adapted for individuals with rare neuroimmune disorders [00:04:59]. The discussion included both physical exercises and emotional work integral to the therapy [00:07:42]. Practical tips for seeking pelvic floor therapy and insurance considerations were also covered [00:10:42]. The episode concluded with encouragement to explore this underutilized service [00:19:23].00:00 Introduction2025-04-2129 min
Ask the Expert1215. Women's Health within NeuroimmunologyIn this "Ask the Expert" episode titled, "Women's Health within Neuroimmunology," Dr. Sonia Singh joined Krissy Dilger of SRNA to share women's health concerns within the context of neuroimmunology, focusing on issues like fertility and pregnancy for those with rare neuroimmune disorders [00:01:20]. Dr. Singh discussed how certain conditions, such as neuromyelitis optica spectrum disorder (NMOSD) and autoimmune encephalitis, and medications could impact fertility [00:03:45]. They also explored the increased risks of relapse during and after pregnancy and the importance of coordinated care between neurologists and obstetricians [00:07:10]. Dr. Singh emphasized the importance of teamwork during pregnancy to ensure optimal outcomes for...2024-11-0415 min
Ask the Expert1213. Operant Conditioning Rehabilitation StudiesIn this episode titled, "Operant Conditioning Rehabilitation Studies," part of the "Ask the Expert: Research Edition" series, Krissy Dilger of SRNA was joined by Dr. Aiko Thompson. Dr. Thompson explained the fundamental principles of operant conditioning and its application in enhancing motor function and sensory pathways in individuals with spinal cord damage due to neuroimmune disorders [00:01:02]. They delved into specific trials aimed at improving spasticity, foot drop, and neuropathic pain, highlighting current studies and ongoing trials [00:02:28]. Dr. Thompson shared details on how eligible participants can take part in these studies and the promising potential outcomes [00:13:39].
2024-09-0615 min
Ask the Expert1211. Community Spotlight - Kim HarrisonIn this episode of "Ask the Expert, Community Spotlight Edition," Lydia Dubose of SRNA spoke with Kim Harrison about her journey with transverse myelitis (TM), adaptive sports, and challenges she has faced since her diagnosis [00:01:25]. Kim highlighted the importance of community support systems in her life [00:11:38]. She discussed managing symptoms, navigating social situations, and raising awareness for rare neuroimmune disorders [00:17:39]. Finally, Kim shared her inspiring story of completing the 500-mile Camino de Santiago in her adaptive wheelchair, demonstrating resilience and determination [00:23:49].
Originally from Atlanta, GA, Kim Harrison currently resides in St. Augustine, FL. She...2024-07-291h 15
Ask the Expert1206. Community Spotlight - Voices of SRNA Volunteers | Part 2The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. In this episode, titled, “Voices of SRNA Volunteers, Part 2,” Minaal Zahid and Doug Kirby joined Lydia Dubose of SRNA. Doug shared his journey with NMOSD, emphasizing the role of volunteers in providing support and education [00:01:49]. Minaal discussed her motivation to volunteer stemming from her brother’s diagnosis of NMOSD [00:02:42]. Minaal and Doug delved into their volunteer activities, including organizing events and contributing to educational resources, highlighting the impact of volunteering on both personal growth and community support [00:07:13].
Minaal Zahid...2024-04-1533 min
Ask the Expert1205. Community Spotlight - Voices of SRNA Volunteers | Part 1The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. In this episode, Alexandra Goulimi and Angela Jackson joined Lydia Dubose of SRNA share their backgrounds and how they got involved with volunteering for SRNA [00:01:43]. Alexandra and Angela discussed their experiences with rare neuroimmune disorders and the support they found through SRNA's programs [00:13:41]. They also shared what they hope to see in the future related to rare neuroimmune disorders and SRNA [00:22:53] and offered advice for anyone who might be interested in getting involved [00:30:51].
Alexandra Goulimi was born in...2024-04-0837 minAsk the Expert1203. Community Spotlight - Rick TelanderThe “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. For this episode, Rick Telander joined Dr. GG deFiebre of SRNA to talk about his journey with transverse myelitis (TM). Rick shared about his diagnostic process [00:08:05], the testing that took place, and the treatment and rehabilitation that he received [00:09:25]. He emphasized the importance of early diagnosis, research for better treatments, and support from organizations like SRNA [00:25:02]. Rick also discussed ongoing symptoms, his experience of living with TM, and the children’s book of poetry that he published [00:26:11].
Rick Tel...2024-03-1542 minAsk the Expert1114. Neurosarcoidosis and Rare Neuroimmune DisordersIn this "Ask the Expert" episode, Krissy Dilger of SRNA interviewed Dr. Giovanna Manzano about neurosarcoidosis and rare neuroimmune disorders. They explored the definition of neurosarcoidosis, its symptoms, and the diagnostic process, emphasizing the challenges in identifying the condition due to its diverse manifestations. Dr. Manzano delved into the potential causes of neurosarcoidosis, highlighting immune system dysregulation and the formation of granulomas. Treatment options, including steroids and immune suppressants, were discussed, and the chronic nature of the disease was explored, with considerations for relapses and long-term effects. The conversation concluded with insights into patient advocacy, the importance of early...2023-12-0426 minAsk the Expert1113. Acute Treatments and Rare Neuroimmune DisordersKrissy Dilger of SRNA was joined by Drs. John J. Chen and Elias S. Sotirchos for an “Ask the Expert” podcast episode titled “Acute Treatments and Rare Neuroimmune Disorders.” The experts began by providing an overview of treatments for an acute demyelinating attack and how they are administered. They also discussed side effects, safety concerns, and the decision process for escalation. Finally, the experts shared age considerations and upcoming research.
John Chen, MD, PhD attended the University of Virginia for his undergraduate and combined MD/PhD degrees. He completed his Ophthalmology residency and Neuro-Ophthalmology fellowsh...2023-11-2834 minAsk the Expert1112. Social Determinants of Health in Rare Neuroimmune DisordersFor this episode of “Ask the Expert,” Krissy Dilger of SRNA was joined by Dr. Elizabeth Wilson. Dr. Wilson discussed her research into how a patient's environment, including life stressors, interacts with their body, genetics, and inflammatory neurologic conditions. She also described the ways that healthcare providers and the community can bridge the gap for those who are negatively affected by health disparities.2023-11-1725 min
Ask the Expert1111. Dr. Anderson's Fellowship ResearchFor this episode of “Ask the Expert: Research Edition,” Dr. GG deFiebre of SRNA was joined by Dr. Monique Anderson. In 2023, Dr. Monique Anderson was awarded a research grant funded through the Pauline H. Siegel Eclipse Fund of SRNA. Dr. Anderson described the study, the background, and what led to the development of this particular research project, which is investigating whether novel neuronal biomarkers within exosomes are found in the blood of patients with transverse myelitis. Dr. Anderson discussed the possible impact of this research on the areas of genetics and diagnostic criteria.2023-10-1823 minAsk the Expert1110. Can Do MS: Take Charge and Coaching SeriesKrissy Dilger of SRNA was joined by Kathy Costello of Can Do MS for an “Ask the Expert” podcast on "Can Do MS: TAKE CHARGE® and Coaching Series." Kathy began by explaining the history and mission of the organization Can Do MS. She then discussed why Can Do MS partnered with SRNA to bring some of its programs to the rare neuroimmune community. Finally, Kathy described the goals and logistics of the TAKE CHARGE® program and the Coaching Series.2023-10-1318 minAsk the Expert1109. Disability and Rare Neuroimmune Disorders Part 2: Accessibility and Disability PrideDr. Cyrena Gawuga returned to speak with Dr. GG deFiebre of SRNA for an “Ask the Expert” episode titled "Disability and Rare Neuroimmune Disorders Part 2: Accessibility and Disability Pride." Dr. Gawuga discussed accessibility, accommodations for employment and education, and inclusion in classrooms. She shared possible solutions for a lack of accommodations in health care settings. Finally, Dr. Gawuga described the meaning of Disability Pride Month.2023-07-241h 08Ask the Expert1108. Disability and Rare Neuroimmune Disorders Part 1Dr. GG deFiebre of SRNA was joined by Dr. Cyrena Gawuga for an “Ask the Expert” podcast on "Disability and Rare Neuroimmune Disorders." Dr. Gawuga began by describing how medical conditions like rare neuroimmune disorders are related to disability. She gave an overview of language and models for disability, and how these impact our views of disability. She shared how her experience with this identity has changed over time. Finally, Dr. Gawuga offered suggestions for connecting with others in the community, as well as navigating sensitive conversations with family or friends.2023-06-051h 01
Ask the Expert1104. Community Spotlight - Paul TurnerThe “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. For this episode, Paul Turner joined Dr. GG deFiebre of SRNA to talk about his experience with transverse myelitis (TM). They discussed his initial symptoms and diagnosis, rehabilitation, treatment, and goals.2023-04-0536 min
Ask the Expert1103. Community Spotlight - Melanie FloodThe “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. For this episode, Melanie Flood joined Krissy Dilger of SRNA to talk about her experience with neuromyelitis optica spectrum disorder (NMOSD) with Sjögren's syndrome. They discussed her initial symptoms and diagnosis, treatments, rehabilitation, and life today.2023-03-1456 min
Ask the Expert1103. Community Spotlight - Melanie FloodThe Community Spotlight edition of the “Ask the Expert” podcast series shares the stories of our community members. For this episode, Melanie Flood joined Krissy Dilger of SRNA to talk about her experience with neuromyelitis optica spectrum disorder (NMOSD) with Sjögren's syndrome. They discussed her initial symptoms and diagnosis, treatments, rehabilitation, and life today.2023-03-0652 min
Ask the Expert1102. COVID-19 and the Risk of CNS Demyelinating DiseasesFor this episode of “Ask the Expert: Research Edition,” Rebecca Whitney of SRNA was joined by Dr. Michael Levy. Dr. Levy gave a brief overview of one of his recent papers with colleagues that was featured in Frontiers in Neurology, “COVID-19 and the risk of CNS demyelinating diseases: A systematic review.” For this paper, the authors reviewed literature published in English on different platforms around the world where the diagnosis was confirmed usually with aquaporin-4 or MOG antibody testing, including children and adults. They examined whether Covid infections cause inflammatory central nervous system (CNS) demyelinating diseases, including multiple sclerosis, NMOSD, M...2023-02-2008 min
Ask the Expert1101. What do we know about holistic therapies to manage symptoms of rare neuroimmune disorders?Krissy Dilger of SRNA was joined by Megan Weigel, DNP, 200RYT for an “Ask the Expert” podcast titled “What do we know about holistic therapies to manage symptoms of rare neuroimmune disorders?” Megan began by introducing holistic therapies and integrative medicine. Next, she explained where medical providers can locate information regarding supplements, their interactions with medication, and evidence in medical publications. She described how holistic therapies such as nutrition, mindfulness, yoga, chiropractic care, and acupressure may benefit rare neuroimmune disorders. Megan also emphasized the importance of working with properly educated and licensed providers. Finally, she recommended resources for those who are...2023-01-3042 min
ABCs of NMOSD401. Mental Health and NMOSDDr. Mary Rensel and Dr. Amy Sullivan joined Krissy Dilger of SRNA for an “ABCs of NMOSD” podcast titled “Mental Health and NMOSD.” The experts began the conversation by sharing how behavioral medicine teams support people who are adjusting to a chronic disease or change of function. They also reviewed some of the tools that can enhance quality of life and address depression, fatigue, and pain levels. These include breathing tools, visualization, body scanning, and mindfulness-based therapy. Finally, Dr. Rensel and Dr. Sullivan discussed support groups and stress relief for care partners and loved ones of people who are receivin...2023-01-1635 minAsk the Expert1011. Health Disparities and Rare Neuroimmune DisordersKrissy Dilger of SRNA was joined by Dr. Mitzi Joi Williams for an “Ask the Expert” podcast on "Health Disparities and Rare Neuroimmune Disorders.” Dr. Williams began by defining health disparities, individual health, and population health. Next, she explained the importance of social determinants of health. She discussed the ways in which economic, social, and environmental factors impact health and how marginalized populations are traditionally most impacted by disparities. Finally, Dr. Williams shared recommendations for health care providers and advocacy organizations to address or mitigate the impact of some of these health disparities and actively help to bridge these gaps.2022-09-1517 minABCs of NMOSD304. What is Tolerization?Dr. Michael Yeaman and Dr. Terry Smith joined Krissy Dilger of SRNA for an “ABCs of NMOSD” podcast titled “What is Tolerization?" The experts began by giving an overview of immune detection and protection. They explained how immune tolerance is established. The experts provided information on how immune tolerance could be lost during autoimmune disease. Finally, they discussed how immune tolerance can be restored and how these corrections might be applied to treatments and cures for NMOSD and MOGAD. There are visual slides that accompany this episode. The visual presentation can be found at https://youtu.be/PtYzqrNi6pg2022-09-0954 minAsk the Expert1010. Immunology of Rare Neuroimmune Disorders Part 3Dr. GG deFiebre of SRNA was joined by Dr. Benjamin Greenberg for an “Ask the Expert” podcast episode titled, “Immunology of Rare Neuroimmune Disorders Part 3.” Dr. Greenberg began by explaining repair versus recovery in the spinal cord, the brain, and the optic nerves. He discussed how the body naturally remakes myelin and current research on astrocytic scars. He also summarized how an MRI may not correlate with how much function returns. Finally, Dr. Greenberg provided information on ongoing research on repair and stem cells, as well as the risks of stem cell clinics.2022-08-2917 minAsk the Expert1009. Air Travel with a Disability: Blind and Guide Dog TravelDr. GG deFiebre of SRNA was joined by Andrea Mitchell of the MOG Project for an “Ask the Expert” podcast on "Air Travel with a Disability: Blind and Guide Dog Travel." Andrea began by providing suggestions on how to prepare for a trip and notify an airline about travel with a guide dog. She detailed how to maneuver through security while never separating from the dog, the rights of passengers who have disabilities through the Air Carrier Access Act (ACAA), and resources available from TSA Cares staff and airlines’ Complaint Resolution Officials (CRO). Finally, Andrea described utilizing relief areas at air...2022-08-2622 min
Ask the ExpertBonus Track | COVID-19 Vaccines Part VII with Dr. GreenbergIn Part 7 of our Q&A series, Dr. Benjamin M. Greenberg, member of SRNA’s Board of Directors and SRNA’s Medical and Scientific Council, discussed COVID-19 vaccinations and the implications for those with rare neuroimmune disorders.2022-08-2225 minAsk the Expert1008. An Update on PoliomyelitisDr. GG deFiebre of SRNA was joined by Drs. Amy Rosenfeld, Sarah Hopkins, and Katie Lockwood for an Ask the Expert podcast episode titled “An Update on Poliomyelitis.” The experts began by providing an overview of poliovirus and how it causes poliomyelitis. They also discussed the major symptoms of poliomyelitis, the two types of poliovirus vaccines, and how poliomyelitis differs from acute flaccid myelitis (AFM) and transverse myelitis (TM). Finally, the experts gave general recommendations about these vaccines for people who have neuroimmune disorders or who are on immunosuppression.2022-08-1139 minAsk the Expert1007. Immunology of Rare Neuroimmune Disorders Part 2Krissy Dilger of SRNA hosted this Ask the Expert podcast on "Immunology of Rare Neuroimmune Disorders Part 2" with experts Dr. Alex Simpson and Dr. Paula Barreras. The experts provided information on how the immune system interacts with the neurological system to cause rare neuroimmune disorders. They described each of these conditions and how different treatments impact the immune system. Finally, the experts talked about long-term issues related to immune-mediated diseases, including relapses, vaccinations, pregnancy and family planning, and genetic components.2022-07-1844 min
ABCs of NMOSD303. Long-Term Therapies in NMOSDFor this “ABCs of NMOSD” podcast titled "Long-Term Therapies in NMOSD," SRNA's Dr. GG deFiebre was joined by Dr. Dean M. Wingerchuk. Dr. Wingerchuk began by explaining the difference between acute versus long-term treatments and providing an overview of the most common long-term treatments for NMOSD. He then discussed side effects and effectiveness. Finally, Dr. Wingerchuk provided information on factors to consider when someone is considering which long-term treatment to use, including antibody testing, approval from medical insurance, and relapse occurrence.2022-06-2232 min
Ask the Expert1006. Immunology of Rare Neuroimmune Disorders Part 1Dr. GG deFiebre of SRNA was joined by Dr. Philippe-Antoine Bilodeau and Dr. Anastasia Vishnevetsky for the first episode in a four part “Ask the Expert” podcast series on “Immunology of Rare Neuroimmune Disorders.” The experts began by discussing innate and acquired immunity, immune cells, and antibodies. They explained the interrelatedness and interactions between different aspects of the immune system and the nervous system. They also gave a detailed overview of how several medications affect the immune system as treatments and therapies for rare neuroimmune disorders. Finally, the experts discussed how the brain and immune system may or may not chan...2022-06-1659 minAsk the Expert1005. Community Spotlight - Ben HarrisThe Community Spotlight edition of the “Ask the Expert” podcast series shares the stories of our community members. For this episode, Ben Harris joined Dr. GG deFiebre of SRNA to talk about his experience with transverse myelitis (TM) as a result of neuroinvasive West Nile virus. They discussed his symptoms and diagnosis, rehabilitation, view of the healthcare system, and philosophy for day-to-day life.2022-06-0630 minAsk the Expert1004. Community Spotlight - Paul GarrettThe Community Spotlight edition of the "Ask the Expert" podcast series shares the stories of our community members. For this episode, a Peer Connect volunteer, Paul Garrett, joined Lydia Dubose of SRNA to talk about his experience with transverse myelitis (TM). They discussed his initial symptoms and diagnosis, treatments, rehabilitation, pain management, and life today.2022-05-2145 minABCs of NMOSD302. NMOSD and Pregnancy/Family PlanningIn 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.2022-04-2646 minAsk the Expert1003. Managing Spasticity with a Baclofen PumpDr. 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 the baclofen pump. You can view this video and transcript on our...2022-03-2148 minABCs of NMOSD301. Pediatric NMOSD | Part II, Treatment & Symptom ManagementRebecca Whitney of SRNA was joined by Drs. Jayne Ness and Silvia Tenembaum for an ABCs of NMOSD podcast titled, “Pediatric NMOSD - Part II, 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.2022-03-0756 minAsk the Expert1002. The Future of Diagnosing Transverse MyelitisFor 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...2022-02-2158 minAsk the Expert1001. Study of Transverse Myelitis in Veterans Health Administration RecordsGG 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...2022-02-1427 minAsk the Expert913. Avoiding a Misdiagnosis: Understanding the Differences Between MOGAD, MS, and NMOSDGG 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...2022-01-1248 minABCs of NMOSD210. Insurance and Access to Care in the USFor 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.2021-12-2124 minAsk the Expert912. MOG Antibody Disease: Diagnosis and Treatment GuidelinesSRNA'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.2021-12-0755 minAsk the Expert911. Temperature Sensitivity and Rare Neuroimmune DisordersKrissy 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.2021-11-0327 minAsk the Expert910. Acute Disseminated Encephalomyelitis: Diagnosis and Treatment GuidelinesKrissy Dilger of SRNA was joined by Dr. Farrah Mateen and Dr. Cindy Wang for an Ask the Expert Podcast on "Acute Disseminated Encephalomyelitis (ADEM): Diagnosis and Treatment Guidelines." The experts begin by providing an overview of ADEM, including a brief definition, signs and symptoms in the acute phase, and potential causes. The physicians then discuss diagnostic tests and how other disorders are ruled out. They talk about acute treatments and long-term care for people with ADEM. Finally, the experts provide information on research being conducted on ADEM.2021-10-2151 minABCs of NMOSD207. Pediatric NMOSD | Part IRebecca Whitney of SRNA was joined by Dr. Jayne Ness and Dr. Silvia Tenembaum for an ABCs of NMOSD podcast entitled, "Pediatric NMOSD - History and Diagnosis, Part I." The experts begin by explaining the history of pediatric NMOSD, including the first known cases and a research paper that was published on the subject. They then discuss how common NMOSD is in pediatric patients and the diagnostic tests used for NMOSD. The experts compare NMOSD and MOGAD in children, including antibody levels, disease course, and treatment protocol. Finally, the experts provide information on differential diagnoses and prognosis.2021-09-0144 min
Ask the ExpertBonus Track | COVID-19 Vaccines Part VI with Dr. GreenbergIn this Part VI of our Q&A series, Dr. Benjamin M. Greenberg, member of SRNA’s Board of Directors and SRNA’s Medical and Scientific Council, discussed COVID-19 vaccinations and the implications for those with rare neuroimmune disorders.2021-08-1925 min
Ask the ExpertBonus Track | COVID-19 Vaccines Part V with Dr. GreenbergIn this Part V of our Q&A series, Dr. Benjamin M. Greenberg, member of SRNA’s Board of Directors and SRNA’s Medical and Scientific Council, discussed COVID-19 vaccinations and the implications for those with rare neuroimmune disorders.2021-08-1617 min
Ask the ExpertBonus Track | COVID-19 Vaccines Part IV with Dr. GreenbergIn this Part IV of our Q&A series, Dr. Benjamin M. Greenberg, member of SRNA’s Board of Directors and SRNA’s Medical and Scientific Council, discussed COVID-19 vaccinations and the implications for those with rare neuroimmune disorders.2021-08-1632 min
Ask the ExpertBonus Track | COVID-19 Vaccines Part III with Dr. GreenbergIn this Part III of our Q&A series, Dr. Benjamin M. Greenberg, member of SRNA’s Board of Directors and SRNA’s Medical and Scientific Council, discussed COVID-19 vaccinations and the implications for those with rare neuroimmune disorders.2021-08-1632 min
Ask the ExpertBonus Track | COVID-19 Vaccines Part II with Dr. GreenbergIn this Part II of our Q&A series, Dr. Benjamin M. Greenberg, member of SRNA’s Board of Directors and SRNA’s Medical and Scientific Council, discussed COVID-19 vaccinations and the implications for those with rare neuroimmune disorders.2021-08-1619 min
Ask the ExpertBonus Track | COVID-19 Vaccines Part I with Dr. GreenbergIn this first part of our Q&A series, Dr. Benjamin M. Greenberg, member of SRNA’s Board of Directors and SRNA’s Medical and Scientific Council, discussed COVID-19 vaccinations and the implications for those with rare neuroimmune disorders.2021-08-1623 minAsk the Expert909. Transverse Myelitis: Symptom ManagementKrissy Dilger of SRNA was joined by Dr. Ram Narayan and Dr. Elena Grebenciucova for an Ask the Expert podcast entitled, "Transverse Myelitis: Symptom Management." The experts discuss medications and other treatment options for symptoms such as pain, spasticity, fatigue, and more. They talk about the different healthcare providers who form a team to help a person with TM receive comprehensive care. Finally, the experts discuss vaccinations and whether the COVID-19 vaccine is recommended for people with TM.2021-08-1055 min
Ask the Expert908. Talking With Your Child About a Difficult DiagnosisSRNA hosted an Ask the Expert podcast, a special edition in collaboration with CDC, entitled "Talking With Your Child About a Difficult Diagnosis." We were joined by pediatric neuropsychologist Dr. Lana Harder. Dr. Harder discussed strategies for talking to your child about the diagnostic tests that are used at the onset of a rare neuroimmune disorder and how they may be invasive or painful. She explained transition of care as a child grows older and closer to adulthood and how to ensure your child is able to ask questions pertaining to their medical care. Dr. Harder talked about discussing...2021-07-2753 minABCs of NMOSD206. History, Diagnosis, and Management of NMOSDDr. Brian Weinshenker joined GG deFiebre of SRNA and Jacinta Behne of The Guthy-Jackson Charitable Foundation for an ABCs of NMOSD podcast entitled, "History, Diagnosis, and Management of NMOSD." Dr. Weinshenker began with a history of NMOSD and how the aquaporin-4 antibody was discovered as a biomarker for NMO. He discussed other diagnoses that were historically used before NMOSD was coined, and he discussed the differences between how NMOSD is understood today since Dr. Devic's first understanding of the disease. Dr. Weinshenker talked about how a diagnosis of NMOSD is made, including the clinical makeup and diagnostic tests used...2021-07-2154 minAsk the Expert907. Transverse Myelitis: Diagnosis and Treatment GuidelinesSRNA hosted an Ask the Expert podcast entitled, "Transverse Myelitis: Diagnosis and Treatment Guidelines" with medical experts Dr. Ram Narayan and Dr. Elena Grebenciucova. The experts began by explaining what transverse myelitis is, signs and symptoms, and how the diagnosis is made. They discussed acute treatments and how they decide which treatments to use for each patient. Finally, the experts talked about rehabilitation and what someone should do if they experience decompensation.2021-06-2255 minABCs of NMOSD205. MOGAD and NMOSD: Is MOGAD Part of NMOSD or a Distinct Diagnosis?GG deFiebre of SRNA is joined by Dr. Eoin Flanagan for an ABCs of NMOSD podcast on "MOGAD and NMOSD – Is MOGAD Part of NMOSD or a Distinct Diagnosis?" Dr. Flanagan outlines the similarities and differences between MOG antibody disease (MOGAD) and neuromyelitis optica spectrum disorder (NMOSD.) He discusses the different treatments for each disorder and how they are distinguished from multiple sclerosis. Dr. Flanagan talks about the history of these disorders and why it is important to differentiate them. Finally, Dr. Flanagan describes how people diagnosed with MOGAD and NMOSD can receive medical care and what they can ex...2021-06-1651 min
Ask the Expert906. The Role of CDC and Public Health in AFM Surveillance | Part IISRNA hosted an Ask the Expert podcast, in collaboration with Centers for Disease Control and Prevention, on "CDC and the Role of Public Health in Acute Flaccid Myelitis (AFM), Part 2." We were joined by Dr. Janell Routh of CDC, Dr. Ben Greenberg of UT Southwestern Medical Center, and Emily Spence Davizon of the Colorado Department of Public Health and Environment. The experts discuss whether an outbreak of AFM cases is expected in 2021, along with the potential causes of AFM, and how an outbreak is defined. They talk about what they are doing to prepare for possible new cases of...2021-05-3157 min
Ask the Expert905. The Role of CDC and Public Health Agencies in AFM Surveillance | Part ISRNA hosted an Ask the Expert podcast, in collaboration with Centers for Disease Control and Prevention, on "CDC and the Role of Public Health in Acute Flaccid Myelitis (AFM)." We were joined by Dr. Janell Routh of CDC, Dr. Ben Greenberg of UT Southwestern Medical Center, and Emily Spence Davizon of the Colorado Department of Public Health and Environment. The experts discuss the process of how AFM cases are diagnosed, reported to public health agencies, sent to CDC, and classified. They describe the role of each organization/agency in reporting a case and the stages each case goes through...2021-05-2046 minABCs of NMOSD204. COVID-19 and NMOSDFor this ABCs of NMOSD podcast, "COVID-19 and NMOSD," GG deFiebre of SRNA is joined by Dr. Michael Levy from Harvard Medical Center and Massachusetts General Hospital. Dr. Levy begins by explaining the risk associated with COVID-19 for someone diagnosed with NMOSD, and how medications such as rituximab may impact them. He discusses the current COVID-19 vaccines available and what people with NMOSD should know about receiving one. He talks about the protocol for relapses that occur during the pandemic and the first line treatments that are used after an attack. Finally, he provides information on whether COVID-19 infection...2021-05-1434 minAsk the Expert904. Behavioral and Psychological Changes in Demyelinating Conditions | Part 2SRNA hosted this Ask the Expert Podcast on "Behavioral and Psychological Changes in Demyelinating Conditions, Part 2" with experts Dr. Cindy Wang, Dr. Alison Wilkinson-Smith, and Densie Maddox, RN, BSN, MSCN. The experts provide information on what kinds of psychological and behavioral changes may occur in people with rare neuroimmune disorders and other demyelinating conditions. They explain how psychology and psychiatry play a role in developing treatment plans and which treatments are most effective. Helping children with these disorders succeed in school environments is discussed. Finally, the experts talk about ways in which adults and children with these disorders can...2021-04-2155 min
Ask the Expert903. My child has just been diagnosed with AFM. What do I need to know?Dr. Sarah Hopkins and Sarah Stoney, MSW, LSW joined SRNA’s Rebecca Whitney for this Ask the Expert podcast, in collaboration with Centers for Disease Control (CDC). The topic is, “My child was just diagnosed with AFM. What do I need to know?” Dr. Hopkins begins by explaining the acute treatments typically administered after an AFM diagnosis and what families should expect during this time. She and Sarah Stoney discuss the importance of the care team in supporting the family during both the acute phase and long-term. Sarah Stoney describes the role of a social worker in helping with applyi...2021-03-1658 minABCs of NMOSD203. NMOSD Stories: IrelandGG deFiebre of SRNA is joined by Ireland Thomas, a member of SRNA and person diagnosed with NMOSD. Ireland begins by describing her initial symptoms when she was six years old and her journey to getting an NMOSD diagnosis. She talks about the treatments she received and her experience as a child within the medical system. Ireland discusses how NMOSD impacts her life, including ongoing symptoms, her personal identity, and the transition from childhood to being an adult living with this disorder. She touches on her fears and her hopes for the future. Finally, Ireland talks about how she...2021-03-0336 min
Ask the Expert901. Dr. Michael Levy’s Research at The NMO Clinic and Research Laboratory at Mass GeneralDr. Michael Levy joined SRNA for an episode of our Ask the Expert Podcast Series: Research Edition, entitled “Dr. Michael Levy’s Research at The NMO Clinic and Research Laboratory at Mass General.” During the podcast, Dr. Levy discusses a project his lab is coordinating to track the experiences of people with rare neuroimmune disorders who have gotten a COVID-19 vaccine. He then talks about research he is conducting on genetics and transverse myelitis. Dr. Levy explains the animal models that are being developed to study aquaporin-4 in neuromyelitis optica spectrum disorder and T-cells in MOG antibody disease. Finally, Dr. Le...2021-02-1918 minABCs of NMOSD202. NMOSD Stories: KristenGG deFiebre of SRNA is joined by Kristen Hewitt, an SRNA support group leader, and person diagnosed with NMOSD. Kristen begins by describing her initial symptoms and her journey to getting an NMOSD diagnosis. She talks about the treatments she received and her experience within the medical system. Kristen discusses how NMOSD impacts her life, including ongoing symptoms, work-life, and personal relationships. She touches on her fears and her hopes for the future. Finally, Kristen talks about how NMOSD has affected her as a parent.2021-02-0429 minABCs of NMOSD201. Complementary Therapies and NMOSDDr. Kyle Blackburn, Dr. Cynthia Wang, and Dr. Ruchika Prakash joined GG deFiebre of SRNA and Dr. Chelsey Judge of the Connor B. Judge Foundation for an ABCs of NMOSD podcast on "Complementary Therapies and NMOSD." The experts begin by explaining what complementary therapy is and what common approaches are used. They discuss acupuncture, chiropractic procedures, supplements, diet, exercise, and medical marijuana. The experts provide information on functional electrical stimulation, a possible complementary therapy at the acute stage of an inflammatory attack. Finally, the experts discuss how mindfulness can be helpful in overall health.2021-01-1259 minAsk the Expert809. Managing Visual IssuesSRNA is joined by Amanda Aaron, OTD and Deb Nikkila, MOT, OTR/L for an Ask the Expert podcast on "How to Manage Visual Issues." The experts describe the purpose of low vision rehabilitation and the resources available for people experiencing visual issues. They respond to questions regarding symptoms such as eye pain, darkened vision, color issues, and more. Deb and Amanda discuss assistive technology for people who are vision impaired, and they talk about driving and transportation. Finally, the experts relay the nuances of adapting one's employment following vision impairment.2020-12-1452 minABCs of NMOSD110. Psychosocial Aspects of NMOSD: Anxiety, Depression, and How to CopeSRNA was joined by Katherine Chapman, LCSW, CRND for this ABCs of NMOSD podcast on "Psychosocial Aspects of NMOSD: Anxiety, Depression, and How to Cope." She begins by explaining the ways in which NMOSD can affect mental health and cause anxiety and depression. She describes different coping mechanisms and strategies for improving mental health. Katherine provides information on therapy and how to choose a mental health professional. Finally, she describes methods of asking for help and communicating with friends and family about mental health struggles.2020-11-1827 minAsk the Expert808. MOG Antibody Disease: Adult and Pediatric PresentationsSRNA partnered with The MOG Project to host this Ask the Expert podcast on "MOG Antibody Disease: Adult and Pediatric Presentations" with Dr. Leslie Benson and Dr. Michael Levy. The experts begin by defining MOG antibody disease and describing the different presentations for adult and pediatric individuals. They discuss the long-term effects and management of the disease. Finally, Dr. Benson and Dr. Levy provide the acute and preventative treatments for MOGAD.2020-10-1954 minABCs of NMOSD109. Symptom Management Mini-Series | Managing Spasticity in NMOSDGG deFiebre of SRNA is joined by Dr. Jacqueline Nicholas for an ABCs of NMOSD podcast on "Symptom Management: Spasticity." Dr. Nicholas begins by explaining spasticity and tone and how it is affected by NMOSD. She discusses the causes of spasticity and why some people experience it while others do not. She describes first-line and second-line treatments for spasticity and how exercise can help. Dr. Nicholas explains how spasticity can affect ligaments, muscles, and bones.2020-10-1238 minABCs of NMOSD108. Symptom Management Mini-Series | Managing Bladder Dysfunction in NMOSDFor this ABCs of NMOSD podcast on "Symptom Management: Bladder Dysfunction," GG deFiebre of SRNA is joined by Dr. Philippines Cabahug. Dr. Cabahug starts off by explaining how bladder function can be affected by NMOSD and the types of problems a person with NMOSD might experience. She discusses treatment options, including medications, catheterization, and Botox injections. She talks about UTIs and methods for avoiding them. Finally, Dr. Cabahug discusses InterStim, the effects of aging on the bladder, and when to establish care with a neurologist.2020-10-1231 minABCs of NMOSD107. Symptom Management Mini-Series | Managing Bowel Dysfunction in NMOSDGG deFiebre of SRNA is joined by Dr. Margaret Jones for an ABCs of NMOSD podcast on "Symptom Management: Bowel Dysfunction." The podcast begins with Dr. Jones giving a brief overview of the possible effects of NMOSD on bowel function and the different issues someone with NMOSD might experience. She then discusses treatment options and how a treatment plan is decided. Dr. Jones talks about digital stimulation, constipation, and the effects of aging on bowel function.2020-10-0929 minABCs of NMOSD106. Symptom Management Mini-Series | Managing Pain in NMOSDMaureen A. Mealy, PhD, joins GG deFiebre of SRNA for an ABCs of NMOSD podcast on "Symptom Management: Pain." Dr. Mealy begins by explaining the different types of pain that can occur with NMOSD. She discusses different treatments for pain and current research into new treatment options. She talks about TENs treatment, Scrambler Therapy, and complimentary treatments. Dr. Mealy discusses pain in relation to a relapse and how to cope with pain long-term.2020-10-0923 minABCs of NMOSD104. Understanding clinical trial results for NMO therapiesDr. Michael Levy and Dr. Elias Sotirchos join GG deFiebre of SRNA for an ABCs of NMOSD podcast on "Understanding Clinical Trial Results for NMOSD Therapies." The medical experts begin by explaining the steps of a clinical trial and the requirements of FDA approval. They then describe the differences between types of studies and the advantages of each type. Finally, Dr. Levy and Dr. Sotirchos discuss the three new NMOSD drugs and compare the results for each trial.2020-08-2049 minAsk the Expert807. Behavioral and Psychological Changes in Demyelinating ConditionsSRNA is joined by Dr. Cynthia Wang and Dr. Lana Harder for an Ask the Expert podcast on "Behavioral and Psychological Changes in Demyelinating Conditions." The experts begin by discussing various psychological effects that people diagnosed with rare neuroimmune disorders may experience, including PTSD, anxiety, stress, and depression. They also talk about behavioral changes that may occur, such as mood swings, changes in personality, and fatigue. Psychological and behavioral challenges of pediatric patients are discussed, as well as possible treatment and coping strategies. Finally, the experts discuss ways in which physicians and medical experts can be educated in regard...2020-08-1353 minAsk the Expert806. Latest Updates on COVID-19 and Rare Neuroimmune DisordersSRNA is joined by Dr. Benjamin Greenberg and Dr. Michael Levy for an Ask the Expert podcast: "Latest Updates on COVID-19 and Rare Neuroimmune Disorders." The experts begin by discussing risk factors for individuals diagnosed with rare neuroimmune disorders contracting COVID-19 and having severe cases of COVID-19 if infected. Treatment and potential vaccination options are discussed, as well as the possible effect of immunosuppressant medication on individuals diagnosed with COVID-19. The experts explain cytokine storms, inflammatory issues such as Kawasaki's, and the possibility of neurological deficits after contracting COVID-19. Finally, the experts discuss the impact of COVID-19 on research...2020-05-1358 minAsk the Expert805. Helping Children and Families Manage and Cope with Stress During COVID-19SRNA is joined by Ana M. Hernandez, MS, CBIS and Lana Harder, PhD, ABPP for an Ask the Expert podcast on "Helping Children and Families Manage and Cope with Stress During COVID-19." The podcast begins with the experts giving stress management techniques for adults and children experiencing stress due to the COVID-19 pandemic. The experts discuss homeschooling and parenting, how to manage family dynamics, and ways to practice self-care.2020-04-091h 05ABCs of NMOSD102. Choosing a Long-Term Treatment Option NMOSDDrs. Benjamin Greenberg, Brian G. Weinshenker, and Stacey Clardy join the second episode of ABCs of NMOSD, entitled "Choosing a Long-Term Treatment Option." The podcast begins with an overview of the most common treatments of neuromyelitis optica spectrum disorder (NMOSD) and their side effects. The experts discuss the three new treatments that have been recently developed, and they discuss the differences between each treatment. They talk about factors to consider when choosing a treatment option, reasons why a person might switch treatments, and insurance implications. Finally, the experts discuss pediatric considerations for treatment, how to find research studies and...2020-04-021h 02Ask the Expert804. Neuroimmune System 101 / A primer on how the nervous and immune systems work togetherSRNA is joined by Dr. Kyle Blackburn and Dr. Cynthia Wang for a podcast on "Neuroimmune System 101: A primer on how the nervous and immune systems work together." The podcast begins with an overview of the nervous and immune systems and how they relate in the context of rare neuroimmune disorders. The experts discuss COVID-19 (coronavirus) in relation to the immune systems of people with rare neuroimmune disorders. They then answer questions on different ways in which the immune system is activated and how different triggers for the immune system may affect someone with an existing rare neuroimmune disorder...2020-03-1948 minABCs of NMOSD101. I have NMOSD. Now What?Dr. Michael Levy, an expert in rare neuroimmune disorders, gives a presentation entitled "I have NMOSD. Now what?", the first podcast in a ten-part series called ABC's of NMOSD. Dr. Levy defines neuromyelitis optica spectrum disorder (NMOSD) and explains the history of the disease. He discusses potential causes and diagnostic criteria. Finally, Dr. Levy discusses acute treatments, short-term expectations after diagnosis, and preventative treatments.2020-02-2452 minAsk the Expert803. What is neurosarcoidosis?SRNA is joined by Dr. Michael Bradshaw and Dr. Rohini Samudralwar for a podcast on "What is neurosarcoidosis?" The experts discuss the symptoms, diagnostic criteria, and potential causes of neurosarcoidosis. They talk about the relationship between neurosarcoidosis and the other rare neuroimmune disorders, as well as predispositions for the disorder. Acute treatments, long-term symptoms, and prognosis are discussed. Finally, the experts respond to several questions from the SRNA community.2020-02-1959 minAsk the Expert802. Newly Diagnosed with a Rare Neuroimmune Disorder: What You Need to KnowDr. Olwen Murphy and Dr. Ram Narayan join SRNA for a podcast on "Newly Diagnosed with a Rare Neuroimmune Disorder: What You Need to Know." The experts begin by discussing early symptoms of a rare neuroimmune disorder and what kind of medical care a person should seek if they are experiencing these symptoms. The experts then describe the process of diagnosing these disorders and what tests should be conducted. Acute treatments, rehabilitation, and next steps are discussed. The experts discuss prognosis and what should be done if a person feels they are experiencing a relapse.2020-02-111h 00Ask the Expert801. Everything You Need to Know About Spasticity and How It's TreatedSRNA is joined by Dr. Philippines Cabahug and Dr. Jacqueline A. Nicholas for a podcast on "Everything You Need to Know About Spasticity and How It's Treated.” The experts define spasticity and tone, and they discuss the causes of spasticity. Treatment options are discussed, as well as differences between individual treatment goals. The experts describe the benefit of spasticity and the timeline for when spasticity may appear after diagnosis.2020-01-311h 01Ask the Expert718. Optic Neuritis — When is it just ON and when does it mean more?SRNA is joined by Dr. Amanda Henderson and Dr. Elias Sotirchos for a podcast on "Optic Neuritis: When is just ON and when does it mean more?" The medical experts begin by explaining what optic neuritis is, the symptoms, and how it is diagnosed. Treatments, both acute and ongoing, are discussed, as well as circumstances surrounding relapses. The medical experts then discuss ON in the context of other diagnoses such as neuromyelitis optica spectrum disorder, MOG antibody-associated disease, and multiple sclerosis. Finally, rehabilitation and current research on ON is discussed.2019-12-1254 minAsk the Expert717. Fatigue and Rare Neuroimmune DisordersSRNA is joined by medical experts Dr. Carlos Pardo and Dr. Bardia Nourbakhsh for a podcast on Fatigue and Rare Neuroimmune Disorders. The experts begin by describing the different causes and types of fatigue. They then discuss treatment options for people experiencing fatigue, both medicated and natural. How to manage the everyday effects of fatigue - whether it's at work, school, home, etc. - is discussed, and the experts give their perspectives on how to talk to one's healthcare providers about fatigue. Finally, the experts discuss the role research plays in studying fatigue and developing new therapies.2019-12-051h 03Ask the Expert716. Genetic Study of AFMThe 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...2019-11-1438 minAsk the Expert713. Imaging Patterns in Myelopathies and MyelitisThe 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.2019-08-0848 minAsk the Expert703. Relapsing vs Monophasic Rare Neuroimmune DisordersRelapsing vs Monophasic Rare Neuroimmune Disorders2019-04-1259 minAsk the Expert701. Autoimmune Encephalitis and Rare Neuroimmune DisordersLatest episode of TMA Ask the Expert Podcast Series2019-01-181h 02Ask the Expert611. Pregnancy and Rare Neuroimmune DisordersLatest episode of TMA Ask the Expert Podcast Series2018-12-2058 minAsk the Expert606. Navigating Life After A Rare Neuroimmune Disorder: Social Security, Benefits, Assistive Technology, and MoreLatest episode of TMA Ask the Expert Podcast Series2018-07-101h 00Ask the Expert604. Aging with rare neuroimmune disordersLatest episode of TMA Ask the Expert Podcast Series2018-04-241h 00Ask the Expert602. Alternative therapies for the treatment of rare neuroimmune disordersAlternative therapies for the treatment of rare neuroimmune disorders2018-03-011h 00Ask the Expert601. Stem Cells as a Treatment for Rare Neuroimmune DisordersStem Cells as a Treatment for Rare Neuroimmune Disorders2018-01-2358 minAsk the Expert503. Managing your health after a rare neuroimmune diagnosisManaging your health after a rare neuroimmune diagnosis2017-03-2157 minAsk the Expert502. Vaccinations and rare neuroimmune disordersVaccinations and rare neuroimmune disorders2017-02-2257 minAsk the Expert207. The Role of Pharmaceutical Companies in Drug Development for Rare Neuroimmune DiseasesThe Role of Pharmaceutical Companies in Drug Development for Rare Neuroimmune Diseases2014-10-1356 minAsk the Expert201. Understanding Autoimmunity & Rare Neuroimmune DisordersThe podcast on “Understanding Autoimmunity and Rare Neuroimmune Disorders” as part of TMA's Ask the Expert podcast series was held on March 25, 2014 a 2 pm EST. The physician-experts on the panel were Dr. Benjamin Greenberg from UTSW and Dr. Carlos Pardo from Johns Hopkins Medicine. Over 50 people dialed-in to listen to the Live Podcast, which was moderated by TMA Executive Director, Chitra Krishnan. Thank you for submitting your questions in advance as well as sharing your questions on the TMA Facebook page. During the 55 minutes of the podcast, we were able to address most of the questions and the focus of t...2014-03-2544 minAsk the Expert103. Children with rare neuroimmune disorders: understanding medical, educational and social considerationsThe podcast on “Children with rare neuroimmune disorders: understanding medical, educational and social considerations” as part of TMA's Ask the Expert podcast series was held on December 16, 2013 a 2 pm EST. The physician-experts on the panel were Dr. Benjamin Greenberg from UTSW and Dr. Lana Harder from y. Over 20 people dialed-in to listen to the Live Podcast, which was moderated by TMA Executive Director, Chitra Krishnan. Thank you for submitting your questions in advance as well as sharing your questions on the TMA Facebook page. During the 55 minutes of the podcast, we were able to address most of the questions and t...2013-12-1759 min