Tma Ask The Expert Podcast Series

At 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 research, highlighting fairness in parenting, and the role of sibling support [00:13:03]. Finally, Barbara emphasized the importance of adapting parenting strategies to balance the needs of all children in the family [00:15:42]. Barbara Babcock works as a Family Therapist in a child and adolescent mental health outpatient unit in the United Kingdom's National Health Service. In her private practice, she works with individuals

The "Community Meets Clinic" podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode hosted by Krissy Dilger of SRNA, we meet Dr. Monica Diaz of University of North Carolina Health. Dr. Diaz shared her journey into neurology and neuroimmunology, driven by her fascination with the brain and problem-solving [00:01:34]. She discussed her research focuses, including demyelinating disorders in Latin America and outcomes in Latino communities in the U.S. [00:03:26]. Dr. Diaz detailed the multidisciplinary approach of The Bodford Family Transverse Myelitis Center, highlighting the range of specialists involved in patient care [00:07:17]. She emphasized the importance of staying active and working with a care team for recovery and shared her hopes for future treatments and potential cures for rare neuroimmune disorders [00:11:08]. You can view the medical profile of Dr. Diaz here:https://www.unchealth.org/care-services/doctors/d/monica-maria-diaz-md-ms

Krissy 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 Introduction02:03 Understanding Pelvic Floor Therapy04:59 Pelvic Floor Therapy for Rare Neuroimmune Disorders07:42 The Emotional and Mental Aspects of Pelvic Floor Therapy10:42 Practical Insights and Patient Experiences19:23 Getting Started with Pelvic Floor Therapy27:38 Conclu

The "Community Meets Clinic" podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode hosted by Krissy Dilger of SRNA, we meet Dr. Michael Levy, a clinician from Massachusetts General Hospital. Dr. Levy is the Research Director of the Division of Neuroimmunology and Neuroinfectious Disease at Mass General and an Associate Professor at Harvard Medical School. He shared his journey into the field of neuroimmunology, discussed his research on the causes of MS, NMOSD, and MOGAD, and provided insights into the multidisciplinary clinic team at Mass General [01:27]. The episode also touched on the importance of understanding and reeducating the immune system to improve patient outcomes [15:22]. You can view the medical profile of Dr. Levy here:https://doctors.massgeneralbrigham.org/provider/michael-levy/1090088Michael Levy, MD, PhD is a recognized neurologist with over 15 years of clinical and research expertise in rare neuroimmunological disorders. He

The "Community Meets Clinic" podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode, Krissy Dilger of SRNA was joined by Dr. Cristina Sadowsky from Kennedy Krieger Institute in Baltimore, Maryland. Dr. Sadowski shared her journey to become a physician and her focus on spinal cord injury rehabilitation [00:02:26]. She discussed the Kennedy Krieger Institute International Center for Spinal Cord Injury's comprehensive care approach, which includes long-term and specialized treatments for both pediatric and adult patients [00:07:00]. Dr. Sadowski concluded with insights on what keeps her motivated and her hopes for advancements in the treatment of rare neuroimmune disorders [00:13:51]. You can view the medical profile of Dr. Sadowsky here: https://www.kennedykrieger.org/patient-care/faculty-staff/cristina-sadowskyBorn in Romania, Cristina Sadowsky, MD attended the Institute of Medicine and Pharmacy in Bucharest. She completed an internship and res

In this episode of "Ask the Expert," Dr. Eoin Flanagan joined Dr. GG deFiebre of SRNA. Dr. Flanagan explained how immunosuppressive medications impact the immune system and the efficacy of vaccines [00:02:45]. He discussed the primary concerns and risks of vaccinating individuals on these therapies, including avoiding live vaccines and the need for additional booster doses [00:04:52]. Dr. Flanagan also talked about the recommended vaccines for those with conditions like NMOSD or MOGAD, and underlined the importance of getting vaccinated to prevent severe infections [00:09:40]. He addressed common misconceptions and emphasized the role of healthcare providers in educating and supporting their patients regarding vaccinations [00:15:32].Eoin Flanagan, MB, BCh is a Professor of Neurology and Consultant in the departments of Neurology and Laboratory Medicine and Pathology at the Mayo Clinic (Rochester, MN). He completed his medical school training at University College Dublin in Ireland in 2005. He did a

In the "ABCs of NMOSD" episode, Landy Thomas of SRNA was joined by Heather Dawn Sowalla and Dr. Meghan Beier to discuss post-diagnosis body dysmorphia in NMOSD patients [00:00:12]. Heather shared her misdiagnosis journey, the impact of steroids, and her coping mechanisms [00:06:24]. Dr. Beier highlighted the importance of finding a supportive community and suggested strategies for managing new identities and body perception [00:08:02]. Both emphasized the significance of connecting with others and seeking professional help to navigate these challenges [00:11:25].Heather Sowalla has lived most of her life in Pennsylvania. After earning her bachelor's degree in Environmental Science and her master's degree in Environmental Studies, she returned home to her family's dairy farm where she utilized her degree focusing on sustainable agriculture. Heather also spent two summer seasons working in Alaska with the Fish and Wildlife Department focusing on sustainable fisheries. Heather first became symptomatic for NMOSD

In this "Ask the Expert" episode, Dr. GG deFiebre of SRNA was joined by Dr. Rebecca Martin, who detailed the mechanism and benefits of transcutaneous spinal cord stimulation (TSS). Dr. Martin explained how TSS, a non-invasive method, aims to amplify spinal cord excitability and improve neurological functions like movement and sensation [00:01:25]. She contrasted TSS with implanted spinal stimulators, noting their respective applications and advantages [00:02:34]. Dr. Martin shared the promising outcomes of TSS in clinical trials, emphasizing its potential for widespread clinical use, and she urged patients to inquire about it at their clinics [00:05:42]. You can read her group's recent paper here: "Transcutaneous Spinal Cord Stimulation Enables Recovery of Walking in Children with Acute Flaccid Myelitis" https://www.mdpi.com/2227-9067/11/9/1116 Rebecca Martin, OTR/L, OTD, CPAM received her Bachelor of Science in Occupational Therapy from Boston University in 2001 and her Occupational Therapy Doctorate from

In 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 both mother and child [00:21:45]. Sonia Kaur Singh, MD is a Neurologist and Assistant Professor of Neurology at Medical University of South Carolina (MUSC), Charleston who specializes in Neuroimmunology. Dr. Singh obtained her medical degree from Kasturba Medical College, Mangalo

In this "Ask the Expert" episode titled, "Self Identity and Finding Meaning Following Diagnosis," Krissy Dilger of SRNA spoke with Susan Y. Wegener, LCSW, a licensed clinical social worker, about coping with a chronic diagnosis and its emotional adjustments, referencing Kübler-Ross’ stages of grief [00:03:45]. Susan discussed the importance of self identity transformation post-diagnosis and the need for patience and self-compassion in finding new ways to move forward [00:08:34]. The value of inner strength, setting priorities, and support groups for reducing isolation and fostering compassion was emphasized [00:15:20]. The discussion concluded with a focus on post-traumatic growth, highlighting greater life appreciation and mental flexibility as key coping strategies [00:16:01]. Susan Y. Wegener, LCSW is a licensed clinical social worker who maintains a private psychotherapy practice in Austin, TX. Her clinical practice specializes in work with individuals coping with chronic medical diagnoses. She completed

The "Community Meets Clinic" podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode, Krissy Dilger of SRNA was joined by Dr. Jennifer Graves from UC San Diego Health. Dr. Graves shared her journey into neurology and neuroimmunology [00:02:14]. She discussed the multidisciplinary approach of her clinic at UC San Diego Health, emphasizing the importance of holistic care for patients with rare neuroimmune diseases [00:08:45]. Dr. Graves highlighted the significance of learning from rare disorders and her hope for future advancements in treatment and cures [00:16:32]. The conversation concluded with insights on maintaining well-being as a clinician and her faith in the collaborative efforts of the medical community [00:24:09]. You can view the medical profile of Dr. Graves here: https://providers.ucsd.edu/details/32993/neurologyJennifer Graves, MD, PhD, MAS is a Professor of Neurosciences and Vice Chair of Human Clinical Research at UCSD. She is D

In the "ABCs of NMOSD" episode titled, "Managing the Dread of Relapse," Landy Thomas of SRNA was joined by Heather Dawn Sowalla. Heather shared her journey with neuromyelitis optica spectrum disorder (NMOSD) [00:01:54] and discussed the fear of relapse associated with the condition [00:14:04]. She described how long-term misdiagnosis and numerous flares impacted her life and mental health [00:16:02]. She shared coping strategies and emphasized the importance of a supportive community and the advancements in NMO treatment [00:25:49]. Finally, Heather encouraged those newly diagnosed to seek a doctor they connect with and lean on the community for support [00:34:12].Heather Sowalla has lived most of her life in Pennsylvania. After earning her Bachelors degree in Environmental Science and her Masters degree in Environmental Studies, she returned home to her families dairy farm where she utilized her degree focusing on sustainable agriculture. Heather also spent two summer seasons working in Alaska with the Fish

In the “ABCs of NMOSD” episode titled, “Social Reintegration Following an NMOSD Diagnosis,” Landy Thomas of SRNA and Kim Jackson-Matthews discussed social reintegration following an NMOSD diagnosis [00:00:14]. Kim shared her diagnosis story, including the onset of symptoms and the challenges she faced [00:04:42]. They talked about the emotional impact of the disease, how it changed Kim's life, and her strategies for maintaining a social life despite her condition [00:22:34]. Kim also offered advice for others dealing with NMOSD on how to stay connected and live their best life [01:19:17].Kim Jackson-Matthews, a past Continuity Director with KCBS-FM / Jack93.1 radio station, is well known in the rare patient community for being an advocate for Neuromyelitis Optica Spectrum Disorder, NMOSD. Her passion for helping people with rare diseases and those in underrepresented areas along with her personal experience with chronic disease has leveraged her as the Diversity, Equity, Inclusion and Accessibility Liaison wi

In the “ABCs of MOGAD” episode titled, “Meteoroid and cosMOG Clinical Trials for MOGAD Treatments,” Krissy Dilger of SRNA was joined by Dr. Michael Levy. They described MOG antibody disease and its similarities to NMO and MS, explaining current therapeutic options [00:01:56]. Dr. Levy talked about the cosMOG clinical trial, detailing the mechanism and potential of rozanolixizumab, and the criteria for participation [00:04:54]. The discussion also covered the Meteoroid trial and satralizumab as a potential treatment for MOGAD, comparing its design and eligibility criteria with those of cosMOG [00:15:12]. Both trials are actively enrolling participants, with the aim of preventing disease relapses and further expanding treatment options in the future [00:20:50]. *Please note: Rozanolixizumab can now be administered in the home setting. Michael Levy, MD, PhD is an Associate Professor of Neurology at Massachusetts General Hospital and Research Director of the Division of Neuroimmunology & Neuroinfectious Disea

In “I have MOGAD. Now what?,” the first episode of the “ABCs of MOGAD” series, Krissy Dilger of SRNA was joined by Dr. Michael Levy. Dr. Levy explained the MOG antibody disease diagnosis, including its autoimmune nature and symptoms [00:01:12]. The discussion covered the history and evolution of the disorder, distinguishing it from other disorders like multiple sclerosis and neuromyelitis optica [00:05:24]. Dr. Levy detailed the diagnostic process, including antibody tests, MRIs, and clinical criteria [00:13:47]. The episode also explored treatment options, long-term effects, and the prognosis of the disease [00:29:30].Michael Levy, MD, PhD is an Associate Professor of Neurology at Massachusetts General Hospital and Research Director of the Division of Neuroimmunology & Neuroinfectious Disease. He completed the MD/PhD program at Baylor College of Medicine with a focus on neuroscience. In 2009, Dr. Levy was appointed to the faculty as Assistant Professor at Johns Hopkins where he started the Neuromyelitis

In 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]. Aiko Thompson, PhD is a neuroscientist and an associate professor in the College of Health Professions, Medical University of South Carolina, Charleston, SC. She did her PhD with Dr. Richard Stein at the University of Alberta, Canada, and then did a postdoc training with Dr. Jonathan Wolpaw at the Wadswo

In this episode of "Ask the Expert," hosted by Krissy Dilger of SRNA, Dr. Shuvro Roy talked about the importance of legislative advocacy in healthcare [00:01:10]. Dr. Roy discussed how physicians can engage in legislative advocacy by sharing their practice stories and providing technical expertise [00:05:05]. He emphasized the crucial role of patients in advocacy, highlighting that their personal stories carry significant weight with legislators [00:07:45]. Dr. Roy also shared examples of successful advocacy efforts, such as telemedicine policy changes and Medicare reforms, contributing to better patient outcomes [00:15:10]. Shuvro Roy, MD is an assistant professor of Neurology at the University of Washington, specializing in Neuroimmunology. He completed his neuroimmunology and neuroinfectious disease fellowship at Johns Hopkins University. He graduated from Medical School at Ohio State University and completed his neurology residency at University of California, Los Angeles. Dr. Roy is actively e

In this episode of "ABCs of NMOSD," Landy Thomas of SRNA hosted a discussion about the experiences of men who are living with neuromyelitis optica spectrum disorder (NMOSD). Doug Kirby and Andrew Jopson shared their diagnosis journeys, highlighting the physical and emotional challenges they faced [00:04:20]. They delved into the impact of the disorder on their personal lives, careers, and relationships, offering advice to newly diagnosed men [00:17:24]. Finally, they emphasized the importance of support groups and looking towards the future with hope [00:32:28]. Doug Kirby has lived most of his life in Utah. After earning a degree in microbiology from BYU, he went to the University of Washington to gain his master’s degree in environmental health science. Doug also spent two years in South Korea as a church missionary. He has been married to his wife, Holly, for 39 years, and they have 5 kids, all boys but the first four, and eight grandchildren. Doug spent the first ten years of his career in the environment

In 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 contracted transverse myelitis (TM) in 2004 while on a business trip to Dallas, TX. In 2012, she partitioned her State Senator, Donzella James, to declare February 15th as Transverse Myelitis Awareness Day. She is on the mayor’s accessibility committee, a United Spinal Association North Florida Chapter Advo

In this "Ask the Expert, Community Spotlight" episode, Krissy Dilger of SRNA was joined by Paula Jones, a filmmaker from New Zealand, who discussed her journey with transverse myelitis and how it has impacted her life and career [00:01:34]. She shared her diagnosis story, detailing the sudden onset of symptoms and the challenges she faced during and after her hospital stay [00:02:26]. Paula talked about her struggles with acceptance, the financial difficulties she faced, and her determination to continue her work [00:07:00]. She also introduced her show, "Spinal Destination," which draws on her experiences and aims to bring the disabled community into mainstream media [00:13:51]. Paula started her screen career at the age of 26 in documentaries and was renowned for telling socially impactful stories. Gang Girls, one of her most acclaimed projects, explores the lives of women in New Zealand gangs. Since becoming paralyzed in 2010 by a rare autoimmune illness, she started her own company wi