Uploaded June 2025 | Updated September 2026, 1 week ago
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/submit
In 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 and couples who are navigating challenging health issues and wish to get their lives back. She obtained her Master of Science in Family Therapy from the Institute of Psychiatry, Psychology, and Neuroscience at King's College London. Barbara also has a Master of Arts in Coaching Psychology/Psychological Coaching and her dissertation research focused on the impact that a systemic approach to coaching has on the wellbeing of adults who have a rare neuroimmune disorder and their primary caregivers. Previously, she was Chair of the Transverse Myelitis Society, from 2013 to 2016, and led their Family Weekend from 2015 to 2019, an event to support families who have a child/adolescent with a rare neuroimmune disorder to discover their potential through challenging outdoor activities. She had transverse myelitis in 2008 and is originally from Pennsylvania, USA. You can contact her at barbara@returntowellness.co.uk and her website is returntowellness.co.uk
00:00 Introduction
01:26 Meet Barbara Babcock: A Journey into Family Therapy
02:20 Barbara's Personal Experience with TM
03:20 Creating Support Systems for Families
06:35 Research Focus: Parenting and Sibling Dynamics
13:03 Themes from the Research
15:42 The Importance of Fairness and Balance
18:38 Challenges and Guilt in Parenting
24:33 Conclusion
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/submit
In 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 and couples who are navigating challenging health issues and wish to get their lives back. She obtained her Master of Science in Family Therapy from the Institute of Psychiatry, Psychology, and Neuroscience at King's College London. Barbara also has a Master of Arts in Coaching Psychology/Psychological Coaching and her dissertation research focused on the impact that a systemic approach to coaching has on the wellbeing of adults who have a rare neuroimmune disorder and their primary caregivers. Previously, she was Chair of the Transverse Myelitis Society, from 2013 to 2016, and led their Family Weekend from 2015 to 2019, an event to support families who have a child/adolescent with a rare neuroimmune disorder to discover their potential through challenging outdoor activities. She had transverse myelitis in 2008 and is originally from Pennsylvania, USA. You can contact her at barbara@returntowellness.co.uk and her website is returntowellness.co.uk
00:00 Introduction
01:26 Meet Barbara Babcock: A Journey into Family Therapy
02:20 Barbara's Personal Experience with TM
03:20 Creating Support Systems for Families
06:35 Research Focus: Parenting and Sibling Dynamics
13:03 Themes from the Research
15:42 The Importance of Fairness and Balance
18:38 Challenges and Guilt in Parenting
24:33 Conclusion

![1213. Operant Conditioning Rehabilitation Studies
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 1213. Operant Conditioning Rehabilitation Studies](https://i.ytimg.com/vi/uxt_O5m7yno/mqdefault.jpg)
![1305. FES 101
In 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 Officer for MYOLYN, Inc. Dr. Bellman is a Triple-Gator with bachelor’s, master’s, and doctorate degrees in mechanical engineering from the University of Florida (UF). In 2013, Dr. Bellman co-founded MYOLYN to commercialize his doctoral research on mobility assistance for people with paralysis and muscle weakness using functional electrical stimulation (FES) and robotics. In his time at MYOLYN, Dr. Bellman has been responsible for building a certified medical device quality management system, managing a team of engineers in the design and development of two Class II medical devices, obtaining grant funding from the National Institutes of Health (NIH), and growing a small business.
Dr. Bellman has been awarded the Entrepreneurial Spirit Award by UF’s Center for Entrepreneurship and Innovation, the O. Hugo Schuck Best Paper Award by the American Automation Control Council, and the Outstanding Young Alumnus Award by the UF Department of Mechanical and Aerospace Engineering. In 2019, Dr. Bellman secured MYOLYN’s place as a finalist in the Toyota Mobility Unlimited Challenge. In addition to his role at MYOLYN, Dr. Bellman has also served as a member of the Board of Directors for NextStep Orlando’s Paralysis Recovery Center and as a member of the Advisory Council for the American Bionics Project. Dr. Bellman’s work has been published in high-impact scientific journals including Muscle & Nerve, IEEE Transactions on Control Systems Technology, and The Journal of NeuroEngineering and Rehabilitation, and he has been an invited guest speaker at universities around the world including UF, École Normale Supérieure (ENS) de Lyon, and the Tokyo Institute of Technology. When not at work, Dr. Bellman can be found trail running or relaxing at home with his wife and family.
00:00 Introduction
00:31 Meet Dr. Matthew Bellman
00:52 Understanding Functional Electrical Stimulation (FES)
01:30 Historical Context and Early Applications of FES
03:35 How FES Works in the Body
07:05 FES for Spinal Cord Damage and Neuromuscular Disorders
09:53 Benefits of FES for Various Symptoms
13:44 Evidence and Secondary Benefits of FES
17:47 Typical FES Session and Accessibility
24:06 Success Stories and Patient Feedback
29:25 Barriers to FES Adoption
33:28 Future Developments in FES Technology
36:46 Final Thoughts and Encouragement 1305. FES 101](https://i.ytimg.com/vi/v4lxAjsRCU8/mqdefault.jpg)

![102. Meteoroid and cosMOG Clinical Trials for MOGAD Treatments
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 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.
00:00 Introduction to the Episode
01:28 Understanding MOG Antibody Disease
02:40 Current Therapies for MOGAD
04:54 Introduction to cosMOG Clinical Trial
05:35 Mechanism and Progress of cosMOG Trial
08:31 Eligibility and Status of cosMOG Trial
15:12 Introduction to Meteoroid Clinical Trial
15:34 Mechanism and Progress of Meteoroid Trial
19:31 Eligibility and Status of Meteoroid Trial
20:50 How to Participate in the Trials
21:57 Conclusion and Final Thoughts 102. Meteoroid and cosMOG Clinical Trials for MOGAD Treatments](https://i.ytimg.com/vi/vTpZxys221Y/mqdefault.jpg)
![1216. Transcutaneous Spinal Stimulation
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 groups 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.
00:00 Introduction to the Podcast
00:30 Meet Dr. Becca Martin
01:02 Understanding Electrical Stimulation
01:25 What is Transcutaneous Spinal Stimulation (TSS)?
02:34 Comparing Implanted and Transcutaneous Stimulation
04:17 Target Areas for Stimulation
05:42 Research and Applications in Various Conditions
08:32 Clinical Benefits of TSS
16:17 Risks and Contraindications
18:43 Current Research and Future Directions
22:23 Final Thoughts and Encouragement 1216. Transcutaneous Spinal Stimulation](https://i.ytimg.com/vi/wK-rUhVkObw/mqdefault.jpg)
![Ask the Expert 1402. Paraneoplastic Diseases and Rare Neuroimmune Disorders
In this SRNA “Ask the Expert” episode, Krissy Dilger of SRNA spoke with neuroimmunologist Dr. Shailee Shah about paraneoplastic neurologic syndromes—immune-mediated, “off-target” effects of cancer that can affect the brain, spinal cord, or peripheral nerves. Dr. Shah described updated diagnostic criteria and scoring that combine neurologic phenotypes, cancer risk, and high-risk autoantibodies, and she explained how immune checkpoint inhibitors can trigger immune-related neurologic adverse events that don’t always fit classic rules [00:01:48]. She reviewed how these syndromes differ from other autoimmune neurologic disorders and outlined common subacute presentations such as limbic encephalitis, brainstem encephalitis, cerebellar ataxia, seizures, and neuropathies [00:08:09]. Dr. Shah emphasized prompt evaluation with neurologic exam, MRI/EEG/EMG as appropriate, blood and CSF antibody testing, cancer screening, and coordinated oncologic and immunosuppressive treatment to prevent worsening disability [00:17:24].
Shailee Shah, MD is a Clinical Assistant Professor in the Neuroimmunology Division with Northwestern Medicine and Northwestern University. She is an autoimmune neurologist with expertise in the management of paraneoplastic and autoimmune neurological diseases. She also treats rare neuroimmunological diseases such as neuromyelitis optica and MOG associated disease. She is co-director of the Northwestern Medicine Paraneoplastic Neurological Disease Clinic.
00:00 Welcome and Guest Intro
00:58 What Is Paraneoplastic
01:48 New Criteria and Antibodies
04:59 Diagnostic Challenges and ICI
08:09 Paraneoplastic vs Autoimmune
10:22 How Common Are They
13:03 Early Symptoms to Watch
17:24 When to Seek Care
19:09 Testing and Workup
24:20 Paraneoplastic Myelitis
27:55 Delays and Specialty Centers
31:38 Cancer Link and Treatment
37:16 Changing Therapies
38:19 Recovery and Prognosis
39:58 Patient Advice and Hope
42:52 Closing Ask the Expert 1402. Paraneoplastic Diseases and Rare Neuroimmune Disorders](https://i.ytimg.com/vi/wPs7F9KpKwc/mqdefault.jpg)

![2024 RNDS | MOG Antibody Disease (MOGAD) and Acute Disseminated Encephalomyelitis (ADEM)
You can view the presentation slides here:
https://files.wearesrna.org/symposia/2024_rnds/slides/2024RNDS_Schreiner.pdf
At the 2024 RNDS, Drs. Teri Schreiner, Michael Levy, and Grace Gombolay shared their expertise in pediatric and adult neuroimmunology, focusing on diagnosing and managing acute disseminated encephalomyelitis (ADEM) and MOG antibody disease (MOGAD) [00:00:53]. Dr. Schreiner provided a detailed overview of ADEM, including typical symptoms, diagnostic criteria, and treatment options [00:05:24]. Dr. Gombolay then explained MOGAD, comparing its symptoms and progression to those of other neuroimmune disorders such as multiple sclerosis (MS) and neuromyelitis optica spectrum disorder (NMOSD) [00:17:24]. The session included a segment where panelists addressed audience questions about treatment efficacy, symptom management, and the challenges of insurance coverage for treatments like IVIG [00:28:36]. Please note that the information shared during this session is for informational purposes only and is not medical advice.
00:00 Welcome and Introductions
02:15 Overview of ADEM
12:15 Understanding MOGAD
17:24 Comparing ADEM, MOGAD, and MS
21:22 Treatment and Recovery
28:36 Questions and Discussions
40:21 Understanding Drug Delivery Systems
40:29 Steroid Dosing Mysteries
40:54 Steroid Side Effects and Alternatives
41:41 MRI Findings in Neuroimmunology
42:59 Diagnosing MOGAD vs. NMOSD
46:27 International Perspectives on MOGAD Treatment
49:24 Managing Fatigue in Neuroimmune Disorders
01:02:39 Challenges with Insurance for IVIG Treatment
01:09:58 Navigating Relapses and Treatment Options 2024 RNDS | MOG Antibody Disease (MOGAD) and Acute Disseminated Encephalomyelitis (ADEM)](https://i.ytimg.com/vi/xOmLucFA5vg/mqdefault.jpg)

