SRNA Soundwaves

SRNA hosted an Ask the Expert podcast, in collaboration with Centers for Disease Control and Prevention, on "CDC and the Role of Public Health in Acute Flaccid Myelitis (AFM), Part 2." We were joined by Dr. Janell Routh of CDC, Dr. Ben Greenberg of UT Southwestern Medical Center, and Emily Spence Davizon of the Colorado Department of Public Health and Environment. The experts discuss whether an ou...

SRNA hosted an Ask the Expert podcast, in collaboration with Centers for Disease Control and Prevention, on "CDC and the Role of Public Health in Acute Flaccid Myelitis (AFM)." We were joined by Dr. Janell Routh of CDC, Dr. Ben Greenberg of UT Southwestern Medical Center, and Emily Spence Davizon of the Colorado Department of Public Health and Environment. The experts discuss the process of how AF...

For this ABCs of NMOSD podcast, "COVID-19 and NMOSD," GG deFiebre of SRNA is joined by Dr. Michael Levy from Harvard Medical Center and Massachusetts General Hospital. Dr. Levy begins by explaining the risk associated with COVID-19 for someone diagnosed with NMOSD, and how medications such as rituximab may impact them. He discusses the current COVID-19 vaccines available and what people with NMOSD...

SRNA hosted this Ask the Expert Podcast on "Behavioral and Psychological Changes in Demyelinating Conditions, Part 2" with experts Dr. Cindy Wang, Dr. Alison Wilkinson-Smith, and Densie Maddox, RN, BSN, MSCN. The experts provide information on what kinds of psychological and behavioral changes may occur in people with rare neuroimmune disorders and other demyelinating conditions. They explain how...

Dr. Sarah Hopkins and Sarah Stoney, MSW, LSW joined SRNA’s Rebecca Whitney for this Ask the Expert podcast, in collaboration with Centers for Disease Control (CDC). The topic is, “My child was just diagnosed with AFM. What do I need to know?” Dr. Hopkins begins by explaining the acute treatments typically administered after an AFM diagnosis and what families should expect during this time. She and...

GG deFiebre of SRNA is joined by Ireland Thomas, a member of SRNA and person diagnosed with NMOSD. Ireland begins by describing her initial symptoms when she was six years old and her journey to getting an NMOSD diagnosis. She talks about the treatments she received and her experience as a child within the medical system. Ireland discusses how NMOSD impacts her life, including ongoing symptoms, he...

For this episode of our Ask the Expert Podcast Series: Research Edition, Rebecca Whitney is joined by Dr. Lana Harder to discuss her "Study on Pediatric Teleneuropsychology." Dr. Harder begins by explaining what neuropsychology is and what a neuropsychology assessment involves. She then talks about the purpose of the study and how telehealth differs from in-person appointments. She relays the find...

Dr. Michael Levy joined SRNA for an episode of our Ask the Expert Podcast Series: Research Edition, entitled “Dr. Michael Levy’s Research at The NMO Clinic and Research Laboratory at Mass General.” During the podcast, Dr. Levy discusses a project his lab is coordinating to track the experiences of people with rare neuroimmune disorders who have gotten a COVID-19 vaccine. He then talks about resear...

GG deFiebre of SRNA is joined by Kristen Hewitt, an SRNA support group leader, and person diagnosed with NMOSD. Kristen begins by describing her initial symptoms and her journey to getting an NMOSD diagnosis. She talks about the treatments she received and her experience within the medical system. Kristen discusses how NMOSD impacts her life, including ongoing symptoms, work-life, and personal rel...

Dr. Kyle Blackburn, Dr. Cynthia Wang, and Dr. Ruchika Prakash joined GG deFiebre of SRNA and Dr. Chelsey Judge of the Connor B. Judge Foundation for an ABCs of NMOSD podcast on "Complementary Therapies and NMOSD." The experts begin by explaining what complementary therapy is and what common approaches are used. They discuss acupuncture, chiropractic procedures, supplements, diet, exercise, and med...

SRNA is joined by Amanda Aaron, OTD and Deb Nikkila, MOT, OTR/L for an Ask the Expert podcast on "How to Manage Visual Issues." The experts describe the purpose of low vision rehabilitation and the resources available for people experiencing visual issues. They respond to questions regarding symptoms such as eye pain, darkened vision, color issues, and more. Deb and Amanda discuss assistive techno...

SRNA was joined by Katherine Chapman, LCSW, CRND for this ABCs of NMOSD podcast on "Psychosocial Aspects of NMOSD: Anxiety, Depression, and How to Cope." She begins by explaining the ways in which NMOSD can affect mental health and cause anxiety and depression. She describes different coping mechanisms and strategies for improving mental health. Katherine provides information on therapy and how to...

SRNA partnered with The MOG Project to host this Ask the Expert podcast on "MOG Antibody Disease: Adult and Pediatric Presentations" with Dr. Leslie Benson and Dr. Michael Levy. The experts begin by defining MOG antibody disease and describing the different presentations for adult and pediatric individuals. They discuss the long-term effects and management of the disease. Finally, Dr. Benson and D...

GG deFiebre of SRNA is joined by Dr. Jacqueline Nicholas for an ABCs of NMOSD podcast on "Symptom Management: Spasticity." Dr. Nicholas begins by explaining spasticity and tone and how it is affected by NMOSD. She discusses the causes of spasticity and why some people experience it while others do not. She describes first-line and second-line treatments for spasticity and how exercise can help. Dr...

For this ABCs of NMOSD podcast on "Symptom Management: Bladder Dysfunction," GG deFiebre of SRNA is joined by Dr. Philippines Cabahug. Dr. Cabahug starts off by explaining how bladder function can be affected by NMOSD and the types of problems a person with NMOSD might experience. She discusses treatment options, including medications, catheterization, and Botox injections. She talks about UTIs an...

GG deFiebre of SRNA is joined by Dr. Margaret Jones for an ABCs of NMOSD podcast on "Symptom Management: Bowel Dysfunction." The podcast begins with Dr. Jones giving a brief overview of the possible effects of NMOSD on bowel function and the different issues someone with NMOSD might experience. She then discusses treatment options and how a treatment plan is decided. Dr. Jones talks about digital...

Maureen A. Mealy, PhD, joins GG deFiebre of SRNA for an ABCs of NMOSD podcast on "Symptom Management: Pain." Dr. Mealy begins by explaining the different types of pain that can occur with NMOSD. She discusses different treatments for pain and current research into new treatment options. She talks about TENs treatment, Scrambler Therapy, and complimentary treatments. Dr. Mealy discusses pain in rel...

For this ABCs of NMOSD podcast, Chelsey Judge, PhD, from the Connor B. Judge Foundation and Sumaira Ahmed from The Sumaira Foundation for NMO help explain NMOSD through their personal experiences. Chelsey tells the story of her brother, Connor's diagnosis and the continuing symptoms he still has, such as fatigue and pain. Sumaira recounts her own diagnosis story and the symptoms she also experienc...

Dr. Michael Levy and Dr. Elias Sotirchos join GG deFiebre of SRNA for an ABCs of NMOSD podcast on "Understanding Clinical Trial Results for NMOSD Therapies." The medical experts begin by explaining the steps of a clinical trial and the requirements of FDA approval. They then describe the differences between types of studies and the advantages of each type. Finally, Dr. Levy and Dr. Sotirchos discu...

SRNA is joined by Dr. Cynthia Wang and Dr. Lana Harder for an Ask the Expert podcast on "Behavioral and Psychological Changes in Demyelinating Conditions." The experts begin by discussing various psychological effects that people diagnosed with rare neuroimmune disorders may experience, including PTSD, anxiety, stress, and depression. They also talk about behavioral changes that may occur, such as...

Dr. Sean J. Pittock and Dr. Dean M. Wingerchuk join us for an ABCs of NMOSD podcast titled, "Am I Having a Relapse?" The experts begin by defining relapses and pseudo relapses, and they discuss the potential symptoms and possible triggers. They discuss what someone should do if they think they may be experiencing a relapse and the tests neurologists use to identify a relapse is taking place. Final...

SRNA is joined by Dr. Benjamin Greenberg and Dr. Michael Levy for an Ask the Expert podcast: "Latest Updates on COVID-19 and Rare Neuroimmune Disorders." The experts begin by discussing risk factors for individuals diagnosed with rare neuroimmune disorders contracting COVID-19 and having severe cases of COVID-19 if infected. Treatment and potential vaccination options are discussed, as well as the...

SRNA is joined by Ana M. Hernandez, MS, CBIS and Lana Harder, PhD, ABPP for an Ask the Expert podcast on "Helping Children and Families Manage and Cope with Stress During COVID-19." The podcast begins with the experts giving stress management techniques for adults and children experiencing stress due to the COVID-19 pandemic. The experts discuss homeschooling and parenting, how to manage family dy...

Drs. Benjamin Greenberg, Brian G. Weinshenker, and Stacey Clardy join the second episode of ABCs of NMOSD, titled, "Choosing a Long-Term Treatment Option." The podcast begins with an overview of the most common treatments of neuromyelitis optica spectrum disorder (NMOSD) and their side effects. The experts discuss the three new treatments that have been recently developed, and they discuss the dif...

SRNA is joined by Dr. Kyle Blackburn and Dr. Cynthia Wang for a podcast on "Neuroimmune System 101: A primer on how the nervous and immune systems work together." The podcast begins with an overview of the nervous and immune systems and how they relate in the context of rare neuroimmune disorders. The experts discuss COVID-19 (coronavirus) in relation to the immune systems of people with rare neur...