『SRNA Soundwaves』のカバーアート

SRNA Soundwaves

SRNA Soundwaves

著者: Siegel Rare Neuroimmune Association (SRNA)
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概要
SRNA Soundwaves is a podcast network that brings together expert insight, research updates, and experiences from the rare neuroimmune disorder community. Through multiple series, SRNA Soundwaves connects those living with rare neuroimmune disorders, caregivers, clinicians, and researchers with trusted information and meaningful conversations that educate, empower, and inspire. Topics include acute disseminated encephalomyelitis (ADEM), acute flaccid myelitis (AFM), MOG antibody disease (MOGAD), neuromyelitis optica spectrum disorder (NMOSD), optic neuritis (ON), and transverse myelitis (TM).062634 衛生・健康的な生活 身体的病い・疾患
エピソード
  • Community Meets Clinic 307. Dr. Melissa Wright
    2026/11/02

    In this episode Krissy Dilger met with Dr. Melissa Wright of the University of Utah and Intermountain Primary Children’s Hospital, a designated Center of Excellence in Rare Neuroimmune Disorders. Dr. Melissa Wright shared how her training in neuroscience and personal experiences as a parent led her into pediatric neurology and rare neuroimmune disorders [00:01:32]. She discussed her research focus on improving pediatric-to-adult healthcare transitions and advancing clinical trial readiness through implementation science to bring meaningful evidence-based care to patients [00:06:17]. Dr. Wright described how patients connect with her multidisciplinary neuroimmunology clinic, the team-based supports available (including nursing coordination, social work, and subspecialists), and her hope for more prospective studies and randomized controlled trials to guide future treatment [00:12:48]. View the medical profile of Dr. Melissa Wright:

    https://healthcare.utah.edu/find-a-doctor/melissa-wright


    Melissa A. Wright, MD is a pediatric autoimmune neurologist at the University of Utah and serves as Director of the Pediatric Autoimmune Neurology and Neuroimmunology Program at Primary Children’s Hospital. She completed medical school and child neurology residency at the University of Utah, followed by fellowship training in Autoimmune Neurology.


    Her clinical and research efforts focus on improving the diagnosis and care of children with neuroinflammatory conditions. She is committed to advancing care that reflects the needs of patients, families, and caregivers, with particular emphasis on improving healthcare transitions for adolescents and young adults living with rare autoimmune neurologic diseases.


    00:00 Meet Dr. Wright

    01:32 Dr. Wright’s Journey

    03:43 Why Neuroimmune Disorders

    06:17 Research Focus Areas

    10:26 Clinic Access and Referrals

    12:48 Multidisciplinary Care Team

    16:17 Self Care Outside Medicine

    18:10 What Families Should Know

    22:27 Hope for the Future

    24:26 Closing

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    27 分
  • Ask the Expert 1412. What is CAR-T therapy?
    2026/09/21

    In this episode of “Ask the Expert," Krissy Dilger of SRNA spoke with Dr. Barbara Willekens of the University of Antwerp about CAR-T cell therapy, explaining it as genetically engineered T cells (autologous or allogeneic) designed to recognize targets like CD19 on B cells and destroy them [00:01:19]. Dr. Willekens reviewed CAR-T’s development since the 1980s for blood cancers, its severe potential side effects, and why successes targeting B cells prompted exploration in autoimmune diseases, including emerging trials for NMOSD and MOGAD [00:04:25]. She described patient selection, the clinical-trial process, expected B-cell reconstitution in about three months, and risks [00:18:55]. Dr. Willekens discussed research questions, including blood-brain barrier interactions, alternative CAR delivery, and future directions comparing approaches, targets, scalability, and cost [00:31:24].


    Barbara M.P. Willekens, MD, PhD, is a neurologist and Clinical Head of Neurology for multiple sclerosis (MS) and other CNS neuroimmunological diseases at Antwerp University Hospital, Belgium, and an Assistant Professor of Neurology at the University of Antwerp. She is an expert in MS and rare neuroimmunological diseases. She founded the University Neuroimmunology Center Antwerp (UNiCA), a multidisciplinary center bringing together patient care, research and education, which has been recognized as a SRNA Center of Excellence for rare neuroimmune disorders. Her clinical and academic career has focused on translating advances in neuroscience and immunology into better treatments and care for people living with neuroinflammatory diseases.


    Dr. Willekens leads and contributes to research ranging from early-stage translational science to international clinical trials and real-world studies. Her work includes clinical and translational research into immune tolerance and cellular therapies such as tolerogenic dendritic cells and CAR-T cell therapy, as well as approaches aimed at promoting remyelination and neuroprotection in MS and developing biomarkers for more personalized care. She has been a principal investigator in multiple academic trials and industry-led clinical trials and has helped build international collaborations and registries that generate evidence to improve treatment and patient care. Dr. Willekens plays a leadership role in the wider neuroimmunology community: she is Co-chair of the European Academy of Neurology's Coordinating Panel for Translational Neurology and Neuroscience, has previously served as Co-chair of its Scientific Panel for Neuroimmunology, is a member of the MSBase Scientific Leadership Group, of MOGAD Eugen Devic European Network, and is a driving force behind the International Susac Syndrome Consortium. Her leadership reflects a commitment not only to advancing science, but also to bringing researchers, clinicians and patients together to turn scientific progress into meaningful improvements in everyday care.


    00:00 Welcome and Guest Intro

    01:19 CAR-T Explained Simply

    04:25 From Cancer to Autoimmunity

    06:35 Why NMOSD and MOGAD

    10:58 B Cells and Targets

    15:56 One Time Treatment Question

    18:55 Who Should Get CAR-T

    21:46 What Patients Experience

    26:12 Immune Reset and Side Effects

    31:24 Dr. Willekens' Lab Research

    35:01 Next Steps and Open Questions

    36:24 Future CAR-T Approaches

    40:12 Closing Thoughts


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    44 分
  • Community Meets Clinic 306. Drs. Brenda Banwell and Haiwen Chen
    2026/09/08

    The "Community Meets Clinic" podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode, Krissy Dilger of SRNA spoke with Drs. Brenda Banwell and Haiwen Chen of Johns Hopkins Children’s Center, a designated Center of Excellence in Rare Neuroimmune Disorders. They shared about their paths into pediatric neurology and focus on rare pediatric neuroimmune disorders [00:01:49]. They described the rapid evolution of diagnosis and treatment over the past 30 years, including advances in MS, MOGAD, and aquaporin-4 disease, expanded pediatric inclusion in diagnostic criteria and trials, and improved outcomes with high-efficacy therapies. The doctors outlined their research approaches—Dr. Banwell’s integrative, imaging-focused team science [00:08:45] and Dr. Chen’s clinical research including a project on IVIG duration for relapsing pediatric MOGAD [00:11:00]. The discussed their multidisciplinary clinic supports, continuity into adulthood within one health system, and emphasis on availability, collaboration, community resources, and hope for the future [00:13:35].


    View the medical profile of Dr. Brenda Banwell:

    https://profiles.hopkinsmedicine.org/provider/brenda-banwell/3154504


    View the medical profile of Dr. Haiwen Chen:

    https://profiles.hopkinsmedicine.org/provider/haiwen-chen/2703784


    Brenda Banwell is the director of the Department of Pediatrics, as well as pediatrician-in-chief and co-director of Johns Hopkins Children’s Center, where she helps manage the hospital’s many clinical and research centers. Dr. Banwell is a renowned expert in the research and treatment of pediatric multiple sclerosis (MS) and other neuroimmune disorders. She specializes in and studies the use of neuroimaging to assess the clinical and cognitive impact of the conditions, as well as the function of the immune system in children with these disorders. Dr. Banwell has published more than 250 manuscripts in high-impact journals, along with over 25 book chapters. In addition, she has over 200 national and international invited lectureships and visiting professorships.


    An advocate for pediatric multiple sclerosis needs and research, Dr. Banwell serves as chair of the International Medical and Scientific Board of the Multiple Sclerosis International Federation, and the Myelin Oligodendrocyte Glycoprotein Antibody–Associated Disease (MOGAD) International Research Consortium. She is also chair of the pediatric committee of the National Institutes of Health NeuroNEXT program, which conducts studies on treatments for neurological diseases through academic, private, and industry collaborations. Dr. Banwell currently serves as past-chair of the International Pediatric Multiple Sclerosis Study Group.


    Dr. Haiwen Chen is a pediatric neurologist who specializes in caring for children with pediatric onset neuroinflammatory and neuroinfectious diseases, with particular interests in demyelinating disorders and myelitis. Dr. Chen earned her MD and PhD from the University of Maryland School of Medicine. She completed a pediatric neurology residency and fellowship training in neuroimmunology and neurological infectious diseases at The Johns Hopkins Hospital. Dr. Chen’s research training focused on understanding synaptic structure and function using molecular biology and microscopy techniques. Her current research focuses on understanding how oligodendrocyte affect synaptic function in health and disease with the goal of developing strategies for preserving and restoring synaptic function to treat cognitive dysfunction in demyelinating disorders.


    00:00 Introduction

    01:49 Why Child Neurology

    04:24 Choosing Neuroimmunology

    08:45 Dr. Banwell's Research Focus

    11:00 Dr. Chen's Research Focus

    13:35 Clinic Team and Referrals

    17:24 Continuity Into Adulthood

    20:55 Self Care and Balance

    25:26 Advice for New Families

    28:57 Hope Through Collaboration

    33:45 Closing

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    36 分
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