Ask the Expert

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 Rocky Mountain University of Allied Health Professions in 2008. Prior to joining the Kennedy Krieger Institute, Dr. Martin worked in brain injury rehabilitation in Boston, Massachusetts.

Dr. Martin joined Kennedy Krieger in 2005 as a Senior Occupational Therapist in the International Center for Spinal Cord Injury. Since 2010, Dr. Martin has been the Manager of Clinical Education and Training at ICSCI and is responsible for program development, staff training, and oversight of the clinical research program. Dr. Martin speaks nationally on topics related to Activity-Based Rehabilitation; she has taught many continuing education courses for rehabilitation professionals in the areas of neurological pathology, rehabilitation, and research. She has been the principal investigator and co-investigator for grants from the Paralyzed Veterans of America Education Foundation and Department of Defense to develop, promote, and disseminate an activity-based restorative therapy training program and curriculum.

In 2011, Dr. Martin was awarded the Leader in Spinal Cord Injury Care by the International Center for Spinal Cord Injury at Kennedy Krieger. From 2011-2016, Dr. Martin served as a Committee Chair for the annual Contemporary Trends in Spinal Cord Injury Management Symposium at Kennedy Krieger. As a consultant for SwissStim, she has helped create clinical use guidelines for training and documentation. In 2015, Dr. Martin was invited to serve on the NIH and NINDS Committee to establish Pediatric Spinal Cord Injury Common Data Elements.

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, Mangalore in Southern India. After graduation, she worked with dementia specialists in India studying dementia in culturally and linguistically diverse populations. She completed her neurology residency at University of Texas Health Science Center Houston (UTHealth Houston) in the Texas Medical Center. During residency, she was involved with innovative learning strategies including a structural competency curriculum and graduated with the prestigious Frank Yatsu Award for Excellence in Clinical Neurology. After residency, she completed a one-year fellowship in Multiple Sclerosis and Neuroimmunology from UTHealth Houston where she was actively involved in medical education and clinical trials. Dr. Singh has a special interest in women’s health and cognition in neuroimmune conditions.

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 her undergraduate degree, in Psychology, from Skidmore College, Saratoga Springs N.Y., 1993 and her graduate degree, in Social Work from Columbia University, New York City in 1995. In addition to her private practice, she has worked in multiple medical settings throughout her career and helped to empower and support individuals from diagnosis through the adjustment process. She became a Partner in Care for the National Multiple Sclerosis Society in 2017 and is passionate about her work with individuals diagnosed with MS and various other neurological diagnoses. In her free time, she enjoys singing in a local chorus, cooking, swimming, and spending time with her family. Please see the following link to her workbook “Hold on to Hope.”

https://www.amazon.com/Hold-Hope-Overview-Strategies-Chronic/dp/1512218715

00:00 Introduction to the Podcast

00:37 Meet the Expert: Susan Wagner

01:00 Coping with a Chronic Diagnosis

01:47 The Emotional Adjustment Process

05:36 Understanding Self Identity Post-Diagnosis

08:34 Dealing with Denial

10:39 Coping Strategies for Shifting Self Identity

14:08 Finding Meaning and Purpose

14:26 Exploring the Impact of Diagnosis

15:25 Reflecting on Values and Strengths

16:06 Coping Strategies for Finding Meaning

16:29 The Role of Relationships and Support Systems

18:05 Prioritizing Self-Care and Realistic Goals

20:04 Finding Meaning in Suffering

20:15 The Concept of Post-Traumatic Growth

24:52 The Importance of Stillness and Self-Compassion

28:31 Mental Flexibility and Creative Thinking

30:02 Conclusion and Final Thoughts

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 Wadsworth Center in Albany, NY. During her PhD, she was engaged in non-invasive human neurophysiology / plasticity research related to the use of FES (functional electrical stimulation) foot drop simulator. She also started investigating normal and abnormal spinal reflex modulation during walking and other dynamic movements in people with and without chronic CNS disorders. Then, during her postdoc, she developed the human H-reflex operant conditioning protocol.

In 2007, Dr. Thompson established her own lab. Since then, she has been working on understanding CNS plasticity in human sensorimotor control and how to guide the plasticity to help restore useful function in people after CNS damage. Her current research focuses on investigating functional roles of spinal reflexes and evaluating the CNS plasticity associated with operant conditioning of EMG evoked responses (e.g., spinal reflexes and motor evoked potential to transcranial magnetic stimulation) in people with SCI and other neuromuscular disorders. Her ongoing research is funded by NIH, DoD, South Carolina funds, and private endorsements.

00:00 Introduction to the Podcast and Guest

01:02 Understanding Operant Conditioning

02:28 Background and Development of Operant Conditioning Trials

05:33 Current Research and Clinical Trials

09:43 Setup and Participation in Studies

11:50 Study Results and Future Directions

13:39 How to Get Involved

14:29 Acknowledgements and Sponsor Information

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 engaged with a number of projects to improve access to care, healthcare inequality, and patient safety for people with MS and related conditions, with a special interest in neuromyelitis optica and MOG antibody disease. His primary research focus examines how to better leverage health systems to understand and treat neuroimmunologic disorders. He chose to work with people who have MS and rare neuroimmunologic conditions because of the opportunity to build longstanding patient-provider relationships and to help his patients thrive in the face of challenging lifelong conditions.

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 Advocacy Representative, a Christopher and Dana Reeve Peer Mentor, and a volunteer at Brooks Rehabilitation Hospital.

Kim organized a Walk-Run-N-Roll and has been a support group leader with SRNA. She has been on the Braves Stadium ADA advisory board, has participated in ROCH Roll on Capitol Hill with United Spinal Association, and has advocated for wheelchair users’ rights for activity based physical therapy with Warrior Momz. Kim is the adaptive athlete who rolled the 500-mile Camino de Santiago in Spain with her adaptive GRIT Freedom wheelchair. She is 65 and lives in an aged community with her husband of 38 years, Brian.

You can learn more about the organization I'll Push You and Kim's journey on the Camino de Santiago here:

https://www.accessiblecamino.com/

https://www.facebook.com/groups/1051370995944241/

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 (TM) 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].

"Spinal Destination" from Whitiora Productions is currently streaming in New Zealand:

https://www.skygo.co.nz/show/mac_sh_136130

https://whitioraproductions.com/whitiora-productions

Please note: The following trailer is intended for adult audiences:

https://youtu.be/BooV5W3Cmt8?feature=shared

Paula Jones 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 with two friends and made three more docos, two in Palestine and one in Cambodia.

In 2016, Paula shifted sideways into drama, writing and directing two short films, A Matter of Time and Yellow Roses. Both films travelled to international festivals. She also wrote and directed the TVNZ comedy "I Date Rejects" and was one of nine Māori women film makers who made the feature film Waru, an anthology telling a story surrounding the child abuse and death of an eight-year-old child. Paula co-wrote and co-directed WHINA, a feature film about Māori pioneer Dame Whina Cooper, a crusader who, at the age of 80, traversed the length of the North Island--1,100 km from the Far North to Wellington--to protest against the continuing loss of Māori land. Her latest works are co-writing and co-directing "Testify," an evangelical church family drama for Warners NZ, and her comedy series "Spinal Destination," based on her time in the Spinal Unit. She has a master's in creative writing from AUT and is the Director of Whitiora Productions Ltd., and is also mother of three grown children and grandmother of one.

Dr. Michael Levy joined Dr. GG deFiebre of SRNA for the “Ask the Expert” podcast episode titled "What is ULTOMIRIS?" Dr. Levy explained that ravulizumab (ULTOMIRIS) is the newest FDA-approved medication for neuromyelitis optica spectrum disorder (NMOSD), offering a longer dosing interval compared to eculizumab (Soliris) [00:01:08]. Dr. Levy discussed the mechanism of ULTOMIRIS, which blocks the complement system to prevent relapses in NMOSD and highlighted the importance of vaccinations and possible antibiotic use to prevent infections while on this medication [00:02:48]. He also noted that ULTOMIRIS is more affordable than Soliris and emphasized the need for insurance coverage to make it accessible to patients [00:16:39].

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 Optica Clinic and Research Laboratory and in 2019 he moved to the Massachusetts General Hospital and Harvard Medical School to develop the research program in neuroimmunology.

Clinically, Dr. Levy specializes in taking care of patients with rare neuroimmunological diseases including neuromyelitis optica, transverse myelitis, MOG antibody disease, acute disseminated encephalomyelitis and optic neuritis. In addition to neuroimmunology clinics, Dr. Levy has a special interest in patients with superficial siderosis of the central nervous system. Dr. Levy is the principal investigator on several clinical studies and drug trials for all of these conditions.

In the laboratory, Dr. Levy’s research focuses on the development of animal models of neuromyelitis optica and transverse myelitis with the goal of tolerization as a sustainable long-term treatment.

This “MOGcast” edition of the “Ask the Expert” podcast series is a collaborative episode titled, “MOGcast 2: Understanding Cortical Encephalitis.” Dr. Eoin Flanagan and Dr. Cristina Valencia Sanchez joined Julia Lefelar of The MOG Project and Dr. GG deFiebre of SRNA to discuss cortical encephalitis, its symptoms, and the connection to MOG antibody disease (MOGAD) [00:04:21]. Audience members asked about the distinction between ADEM and cerebral cortical encephalitis, their treatments, diagnostic methods, and long-term impacts [00:35:34]. Dr. Flanagan and Dr. Sanchez agreed that the preventive treatment approach remains similar regardless of the MOGAD phenotype [00:40:36]. The discussion touched on recent studies on the diagnostic utility of MOG antibody testing in cerebrospinal fluid, and ongoing research on treatments, including clinical trials for developing FDA-approved medications for MOGAD [00:43:05]. Dr. Flanagan and Dr. Sanchez addressed community questions on fulminant cortical involvement cases [00:50:00], the long-term effects of Rituximab treatment [00:51:23], anxiety attacks and mood swings in ADEM [00:53:34], and treatment decisions based on antibody levels [00:54:49].

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 medical residency in Ireland and then completed neurology residency, fellowships in neuroimmunology and a masters in clinical and translational science at Mayo Clinic (Rochester, MN). He works in the Autoimmune Neurology and Multiple Sclerosis Clinics and the Neuroimmunology Laboratory at the Mayo Clinic. His clinical expertise and research are focused on inflammatory myelopathies and their imaging patterns, myelin oligodendrocyte glycoprotein (MOG) antibody associated disorder, neuromyelitis optica spectrum disorders, autoimmune encephalitis, paraneoplastic neurologic disorders, and multiple sclerosis. He is principal investigator on an NIH RO1 grant studying MOG antibody associated disorder.

Cristina Valencia Sanchez, MD, PhD is an Assistant Professor of Neurology and Senior Associate Consultant in the Department of Neurology at the Mayo Clinic (Phoenix, AZ). She completed her medical school training and PhD in Neuroscience at the Universidad Complutense de Madrid. She did a Neurology residency in the Hospital Universitario Clinico San Carlos and then completed Neurology residency and fellowships in ARZ Multiple Sclerosis and RST Autoimmune Neurology at the Mayo School of Graduate Medical Education, Mayo Clinic College of Medicine, in Arizona and Minnesota.

The research interests of Dr. Valencia Sanchez focus on autoimmune disorders involving the central nervous system. These include neuromyelitis optica spectrum disorders, myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD), autoimmune encephalitis, and paraneoplastic neurological syndromes. She is particularly interested in the neurological complications of immune checkpoint inhibitor cancer immunotherapy. The clinical trials that she leads at Mayo Clinic in Arizona are among the first studies that may lead to approval of new targeted therapies for MOGAD and autoimmune encephalitis. Additionally, Dr. Valencia Sanchez’s clinical research allows for increased recognition of autoimmune neurological disorders. Also, her work is helping to avoid misdiagnosing autoimmune encephalitis in the clinical setting. Her research leads to earlier diagnosis and appropriate treatment to ultimately improve patient outcomes.

This “MOGcast” edition of the “Ask the Expert” podcast series is a collaborative episode titled, “The Latest in Treatments from an Adult and Pediatric Perspective.” Dr. Elias Sotirchos and Dr. Grace Gombolay joined Julia Lefelar of The MOG Project and Dr. GG deFiebre of SRNA and answered questions from the online audience. Dr. Sotirchos and Dr. Gombolay reviewed acute treatments for MOG antibody disease (MOGAD) in adults and children and possible side effects [00:03:57]. Regarding preventative treatments, Dr. Sotirchos and Dr. Gombolay described the importance of shared decision-making with patients to consider factors like administration method, insurance coverage, and patient preferences [00:20:10]. They discussed ongoing clinical trials for MOGAD treatments and the hope for future FDA approval [00:51:38]. Finally, Dr. Gombolay highlighted the difficulties in accessing preventive medications for patients from certain demographic groups and ongoing efforts to improve access [00:56:35].

Elias Sotirchos, MD is a neurologist at Johns Hopkins Hospital in Baltimore, Maryland. He specializes in the diagnosis, management, and treatment of neuroimmunological disorders that involve the central nervous system, including multiple sclerosis (MS), neuromyelitis optica spectrum disorder (NMOSD), and myelin oligodendrocyte glycoprotein-immunoglobulin G (MOG-IgG)-associated disorder (MOGAD). His research focuses on developing and validating novel imaging and blood-based biomarkers of these conditions, and clinical trials of experimental therapeutic agents.

Grace Gombolay, MD is a Pediatric Neurologist at Children’s Healthcare of Atlanta and Assistant Professor at Emory University School of Medicine. Dr. Gombolay attended medical school at The Johns Hopkins School of Medicine, where she was awarded a yearlong position as a Howard Hughes Medical Institute–National Institutes of Health Research Scholar in basic immunology research. After finishing medical school, she completed a pediatric neurology residency at Massachusetts General Hospital. She then completed an additional year of fellowship training in pediatric neuroimmunology at Boston Children’s Hospital, Brigham and Women’s Hospital and Massachusetts General Hospital.

Over the course of her career at Children’s, Dr. Gombolay started the Pediatric Neuroimmunology and Multiple Sclerosis Clinic. This multidisciplinary clinic helps manage all aspects of patient care, including medical, psychological and school-related issues. Her goal is to have the clinic become part of multi-center collaborations for clinical care and research. Dr. Gombolay also serves as a part-time consultant for the Centers for Disease Control and Prevention (CDC), where she reviews cases related to surveillance of acute flaccid myelitis cases in the U.S.