SRNA Soundwaves

Latest Episodes:

Ask the Expert 1301. Vaccines and Immunosuppression Feb 18, 2025

Show notes

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 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.

00:00 Introduction

00:47 Understanding Immunosuppressants and Vaccines

01:28 Primary Concerns with Vaccinating Immunosuppressed Patients

02:30 Recommended Vaccines for Immunosuppressed Patients

07:11 Timing and Effectiveness of Vaccinations

08:21 Measuring Vaccine Response

09:24 Addressing Missed Doses and Safety Considerations

16:41 Public Health Implications and Patient Advocacy

17:56 Advice for Vaccine-Hesitant Patients

19:06 Healthcare Providers' Role in Vaccination

20:03 Conclusion and Final Thoughts

ABCs of NMOSD 601. Body Dysmorphia Feb 10, 2025

Show notes

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 around 2004 and has since lost a good deal of her vision, but she is doing well otherwise. Heather is newly engaged to Doug, a fellow NMOSD patient, and they plan on creating a life together in Vintondale, Pennsylvania.

Meghan Beier, PhD is on faculty at Johns Hopkins and is a Health and Rehabilitation Psychologist specializing in multiple sclerosis at the Rowan Center for Behavioral Medicine. Dr. Beier completed her PhD in Clinical Psychology, Health Emphasis, from Yeshiva University then completed a postdoctoral fellowship, funded by the National MS Society, at the University of Washington where she focused on the rehabilitation, cognition, and mental health of individuals living with MS.Dr. Beier has been featured in well-known publications such as the New York Times, People Magazine, and Psychology Today. She is an internationally invited keynote speaker and also an active consultant and speaker for organizations such as National MS Society, Can Do Multiple Sclerosis, and more. Dr. Beier’s research interests include neuropsychological outcomes for individuals living with MS; cognitive rehabilitation; and behavioral approaches to wellness. She continues to remain active in research as an adjunct faculty member of Johns Hopkins University School of Medicine.Dr. Beier’s passion for improving care for people living with challenging medical conditions led her to create Find Empathy, which provides a free directory of mental health providers that specialize in working with medical populations. Find Empathy also provides continuing education for mental health professionals focused on how best to serve those living with or affected by life altering illnesses.

https://www.nationalmssociety.org/https://cando-ms.org/https://scholar.google.com/citations?user=KUPu4O4AAAAJ&hl=en

https://findempathy.com/https://findempathy.com/learn/

00:00 Introduction
01:10 Meet the Guests: Heather Sawala and Dr. Megan Beier
03:26 Heather's Diagnosis Journey
05:04 Dr. Beier's Work and Find Empathy
08:02 Discussion on Post-Diagnosis Body Dysmorphia
11:25 Coping Strategies and Personal Experiences
24:57 Advice for Newly Diagnosed Patients
33:18 Final Thoughts and Resources

Ask the Expert 1216. Transcutaneous Spinal Stimulation Nov 08, 2024

Show notes

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.

Ask the Expert 1215. Women's Health within Neuroimmunology Nov 04, 2024

Show notes

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.

Ask the Expert 1214. Self Identity and Finding Meaning Following Diagnosis Oct 29, 2024

Show notes

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

Community Meets Clinic 103. Dr. Jennifer Graves Oct 11, 2024

Show notes

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/neurology

Jennifer Graves, MD, PhD, MAS is a Professor of Neurosciences and Vice Chair of Human Clinical Research at UCSD. She is Division Chief of Neuroimmunology and directs clinics at UCSD, the San Diego VA Hospital, and the Rady Children’s Hospital. She completed an MD and PhD in Biophysics at the University of Texas Southwestern. She trained in neurology at the University of Pennsylvania receiving the Arthur K. Asbury Award for Clinical Excellence. She completed two fellowships in Neuro-ophthalmology at the University of Pennsylvania and in Multiple Sclerosis and Clinical Research Methods at the University of California, San Francisco.

Her current research focuses on the role of biological age on neuroinflammatory disease expression and the development of wearable sensors to instrument the physical exam for 21st century neurological "vital signs." Her past work has included the study of genetic, environmental, and sex-related factors in neuroimmunological diseases and the application of visual outcome measures in these diseases. She is currently the North American Editor for the Multiple Sclerosis Journal.

00:00 Introduction and Welcome
00:59 Meet Dr. Jennifer Graves
01:35 Journey into Neuroimmunology
02:35 Clinic Overview and Services
03:31 Focus on Rare Neuroimmune Disorders
04:42 Multidisciplinary Clinic Team
06:27 Accepting New Patients
07:19 Self-Care as a Clinician
09:41 Commitment to Patients and Research
10:54 Hope for the Future
12:07 Conclusion

ABCs of NMOSD 504. Managing the Dread of Relapse Oct 04, 2024

Show notes

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 and Wildlife Department focusing on sustainable fisheries. Heather first became symptomatic for NMOSD around 2004 and has since lost a good deal of her vision, but she is doing well otherwise. Heather is newly engaged to Doug, a fellow NMOSD patient, and they plan on creating a life together in Vintondale, Pennsylvania.

ABCs of NMOSD 503. Social Reintegration Following an NMOSD Diagnosis Sep 30, 2024

Show notes

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 with the Guthy-Jackson Charitable Foundation. As a 2nd degree Black Belt in Taekwondo, she is very passionate about health and wellness. For over twenty-five years Kim has been a licensed Personal Fitness Trainer whose focus is to educate and motivate people to, “Just Keep Moving!” Kim has held the office of Co-Chair of the Physical and Mental Health Committee as a member of Delta Sigma Theta Sorority, Inc. Los Angeles Alumnae Chapter and was excited to spread the word about NMOSD during their Self-Care Summit: Seven Days of DeltaCare now on YouTube. Kim has gone to Washington, DC for Rare Disease Week on Capitol Hill with RDLA to speak to state stakeholders. She will continue to use her voice to advocate for those who can’t do so for themselves.

https://www.youtube.com/playlist?list=PLOLU7_4RDHZlPqQq42qkHaFkmwFWcTVyU

ABCs of MOGAD 102. Meteoroid and cosMOG Clinical Trials for MOGAD Treatments Sep 16, 2024

Show notes

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

ABCs of MOGAD 101. I Have MOGAD. Now What? Sep 13, 2024

Show notes

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].

00:00 Introduction and Guest Introduction

01:33 Understanding MOG Antibody Disease

03:09 History and Discovery of MOG Antibody Disease

06:13 Diagnostic Process for MOG Antibody Disease

09:09 Acute and Long-Term Treatment Options

14:33 Choosing the Right Treatment

16:01 Rehabilitation and Follow-Up

18:42 Long-Term Effects and Prognosis

22:19 Conclusion and Future Discussions