Ask the Expert

By: Siegel Rare Neuroimmune Association (SRNA)
  • Summary

  • The goal of our “Ask the Expert” podcast series is to share the latest research and information on rare neuroimmune disorders and provide an avenue for individuals diagnosed with these disorders and their family members to ask questions to experts who specialize in these disorders. The podcasts are moderated based on questions submitted by our community. We would like to hear from you. If there are topics that you would like us to address in our podcasts, you can share your thoughts by sending an email to info@wearesrna.org and please use SRNA Podcast in the subject.
    Siegel Rare Neuroimmune Association (SRNA)
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Episodes
  • 1216. Transcutaneous Spinal Stimulation
    Nov 8 2024

    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) [00:02:10]. Dr. Martin explained how TSS, a non-invasive method, aims to amplify spinal cord excitability and improve neurological functions like movement and sensation [00:05:25]. She contrasted TSS with implanted spinal stimulators, noting their respective applications and advantages [00:15:12]. Dr. Martin shared the promising outcomes of TSS in clinical trials, emphasizing its potential for widespread clinical use and urging patients to inquire about it at their clinics [00:33:45]. You can learn more about Dr. Martin’s research here: 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.

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    25 mins
  • 1215. Women's Health within Neuroimmunology
    Nov 4 2024

    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.

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    15 mins
  • 1214. Self Identity and Finding Meaning Following Diagnosis
    Oct 29 2024

    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

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    32 mins

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