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.

The “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 Telander is the Senior Sports Columnist for the Chicago Sun-Times. He is the author of ten books and was previously a senior writer for Sports Illustrated and ESPN, the Magazine. An original member of “The Sportswriters on TV” television show, Rick has been named Illinois Sportswriter of the Year nine times, and his work has been collected in over a dozen anthologies. He has been awarded the Sigma Delta Chi Award by the Society of Professional Journalists and the Dan Jenkins Lifetime Medal for Excellence in Sportswriting from the University of Texas. In 2021 he was inducted into the National Sportswriters Hall of Fame in Winston-Salem, North Carolina. Rick’s book, Sweet Dreams: Poems and Paintings for the Child Abed is available online:

https://www.skyhorsepublishing.com/9781510778337/sweet-dreams/

Gaining Functional Recovery through Occupational Therapy

Open Forum on Acute Disseminated Encephalomyelitis

Open Forum on Neuromyelitis Optica Spectrum Disorder

Open Forum on Transverse Myelitis, including Acute Flaccid Myelitis

The Role of Nutrition in Managing Your Health

Managing your health after a rare neuroimmune diagnosis

Vaccinations and rare neuroimmune disorders

Building a multidisciplinary team for complex care after a diagnosis of ADEM, NMOSD, ON, and TM (including AFM)

Quality of Life in a Wheelchair

Contraception, pregnancy, delivery and child care after a diagnosis of ADEM, NMOSD and TM

For this episode of “Ask the Expert: Research Edition,” "Increased Intracranial Pressure in Pediatric MOG Antibody Disease," Krissy Dilger of SRNA was joined by Dr. Cynthia Wang and Dr. Linda Nguyen. They discussed MOG antibody disease and the significance of MOG antibodies in diagnosis (00:00:02-00:03:36). Dr. Nguyen highlighted the background of the study and how this research focused on determining the impact of elevated intracranial pressure on patient outcomes (00:03:52-00:06:56). She reviewed the implications of the findings for patient management, emphasizing the importance of early recognition and intervention to mitigate disability (00:10:34-00:14:02). Dr. Wang and Dr. Nguyen anticipated future studies and stressed the collaborative effort required for better patient outcomes and the need for ongoing research in this field (00:17:16-00:20:30).

Dr. Linda Nguyen completed her MD, PhD training at West Virgina University in 2017, and then pediatric neurology residency at University of California San Diego in 2022. Currently, she is a neuroimmunology fellow at University of Texas Southwestern.

Dr. Cynthia Wang received her medical degree from University of Texas Southwestern Medical Center in Dallas, Texas and completed a pediatrics and pediatric neurology residency at Mott Children’s Hospital, University of Michigan Health System in Ann Arbor, Michigan. Dr. Wang completed her James T. Lubin Fellowship under the mentorship of Dr. Benjamin Greenberg at The University of Texas Southwestern and Children’s Health. Her research study was a prospective, longitudinal study on acute disseminated encephalomyelitis (ADEM) to identify the clinical characteristics, treatment methods, and follow-up interventions that are associated with better and worse patient-centered outcomes.

Special Podcast - Understanding Acute Flaccid Myelitis

Sexual function and quality of life after a diagnosis of ADEM, NMOSD and TM

Understanding Types of Research in ADEM, NMOSD, and TM, including AFM

Back-to-School Preparation for Students with Demyelinating Diseases: Legal and Neuropsychological Perspectives

Open Forum on TM including AFM, NMOSD, ON and ADEM

Learning About Acute Disseminated Encephalomyelitis

The Power of Sharing Stories

Comprehensive Management of Neuropathic Pain

Diagnosing TM, NMO and ADEM

Our Lives: Our Stories

The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. This episode is part of a special series on grief and loss. Lisa McDaniel joined Krissy Dilger of SRNA to share about her family’s experience with neuromyelitis optica spectrum disorder (NMOSD).

Lisa McDaniel’s awareness of rare disease began in 2007, after the onset of neuromyelitis optica spectrum disorder (NMOSD) in her 5-year-old son, Collin. She learned what it took to be a “Rare Mom” and fought for her son’s life. After Collin’s passing in 2012, Lisa switched gears and went to work for the Guthy-Jackson Charitable Foundation (GJCF), where she is now the Director of Patient Advocacy. She now uses her extensive caregiver experience to help other patients and families living with NMOSD. Through GJCF, Lisa is able to engage with the NMOSD community to provide resources, information, and education, as well as lead support groups and raise awareness of rare diseases through educational events.

Bowel, Bladder, and Sexual Dysfunction in TM, NMOSD, and ADEM

Educational Support Services: Understanding IEPs and 504 Plans for Students Diagnosed with TM (including AFM), ADEM, and NMOSD

CAPTURE - Town Hall Meeting

Developing a Cardio and Strength Training Program at Home after a Non-Traumatic Spinal Cord Injury

Living with Myelitis (TM/AFM, NMO, ON, ADEM): Navigating Life, School, College, Work and Beyond

Living with a diagnosis of TM including AFM, NMO, or ADEM as an adolescent and young adult

NMO Studies and Clinical Trials: What Should I Know?

Depresión y Disfunción Cognitiva después de un Diagnóstico de Mielitis Transversa, Neuromielitis Óptica y Encefalomielitis Aguda Diseminada

Understanding Depression and Cognitive Dysfunction After A Diagnosis of TM, NMO, and ADEM

Understanding Neuromyelitis Optica and Neuromyelitis Optica Spectrum Disorder: NMO-101

The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. This episode is part of a special series on grief and loss. Chris Lopardi joined Krissy Dilger of SRNA to share about his family’s experience with acute disseminated encephalomyelitis (ADEM).

Chris Lopardi is the father of Mason Lopardi. Chris lost his son, Mason at age seven to ADEM in May of 2020. Chris, his wife Amanda, and their family have made it their passion to help spread the word of what ADEM is and to help those affected by it. Through their organization, The Miles for Mason Memorial Foundation, they hope to help those affected by ADEM.

Hablemos de Mielitis Transversa y Neuromielitis Óptica

Understanding Vaccinations and Autoimmune Diseases

Understanding Transverse Myelitis: TM 101

Support for Caregivers: How to cope when a loved one is diagnosed with NMO, ADEM or TM?

Update on Outbreak of Paralysis in US:  Acute Flaccid Myelitis

The Role of Pharmaceutical Companies in Drug Development for Rare Neuroimmune Diseases

Alternative Therapies and Lifestyle Management after TM, NMO and ADEM

Understanding Clinical Trials in NMO and TM

The podcast on “Understanding Pediatric NMO, ADEM and TM” as part of TMA's Ask the Expert podcast series was held on July 18, 2014 a 4:30 pm EST. The physician-experts on the panel were Dr. Benjamin Greenberg from University of Texas Southwestern and Dr. Teri Schreiner from University of Colorado School of Medicine and Children's Hospital Colorado. Over 30 people dialed-in to listen to the Live Podcast, which was moderated by our guest moderator, Samuel Hughes. 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 the questions was determined by those that received the most votes by our community. We are planning on future podcasts on topics of Fatigue & Cognition, Spasticity Management, and more to address your questions and concerns.

The podcast on “The Role of Exercise and Rehabilitation in Non-Traumatic Spinal Cord Injury” as part of TMA's Ask the Expert podcast series was held on June 16, 2014 a 12 pm EST. The physician-experts on the panel were Dr. Becker from the International Neurorehabilitation Institute, Dr. Farrar from University of Texas Southwestern and Dr. Zackowski from Johns Hopkins Medicine. Over 50 people dialed-in to listen to the Live Podcast, which was moderated by the Transverse Myelitis Association's 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 the questions was determined by those that received the most votes by our community. We are planning on future podcasts on topics of Fatigue and Cognition, Spasticity Management, and more to address your questions and concerns.

In 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 diagnosis, and ongoing research efforts in the field.

Giovanna S. Manzano, MD is a neuroimmunologist/MS specialist and neurohospitalist at the Massachusetts General Hospital and the Brigham and Women's Hospital in Boston, Massachusetts. She provides care to patients with neuroimmunologic diseases inclusive of CNS demyelinating disorders, autoimmune/paraneoplastic encephalitis and cerebellar degeneration, neurosarcoidosis, and neurotoxicities from oncologic therapies. Her research is focused on optimizing care delivery and approach to treatment of neuroimmunologic conditions by way of studies that emphasize patient reported outcomes, quality improvement, and clinical trial design.

The podcast on “Understanding and Managing Neuropathic Pain” as part of TMA's Ask the Expert podcast series was held on May 9, 2014 a 1 pm EST. The physician-experts on the panel were Dr. Newsome from The Johns Hopkins Transverse Myelitis Center and Dr. Allen DeSena from University of Texas Southwestern. Over 40 people dialed-in to listen to the Live Podcast, which was moderated by our guest moderator, Samuel Hughes. 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 the questions was determined by those that received the most votes by our community. We are planning on future podcasts on topics of Fatigue and Cognition, Spasticity Management, and more to address your questions and concerns.

The 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 the questions was determined by those that received the most votes by our community. We are planning on future podcasts on topics of Fatigue and Cognition, Pain Management, Spasticity Management, and more to address your questions and concerns.

The 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 the focus of the questions was determined by those that received the most votes by our community. We are planning on future podcasts on topics of Fatigue and Cognition, Pain Management, Spasticity Management, and more to address your questions and concerns.