SRNA Soundwaves

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...

Dr. Michael Levy, an expert in rare neuroimmune disorders, gives a presentation titled, "I have NMOSD. Now what?", the first podcast in a ten-part series called ABC's of NMOSD. Dr. Levy defines neuromyelitis optica spectrum disorder (NMOSD) and explains the history of the disease. He discusses potential causes and diagnostic criteria. Finally, Dr. Levy discusses acute treatments, short-term expect...

SRNA is joined by Dr. Michael Bradshaw and Dr. Rohini Samudralwar for a podcast on "What is neurosarcoidosis?" The experts discuss the symptoms, diagnostic criteria, and potential causes of neurosarcoidosis. They talk about the relationship between neurosarcoidosis and the other rare neuroimmune disorders, as well as predispositions for the disorder. Acute treatments, long-term symptoms, and progn...

Dr. Olwen Murphy and Dr. Ram Narayan join SRNA for a podcast on "Newly Diagnosed with a Rare Neuroimmune Disorder: What You Need to Know." The experts begin by discussing early symptoms of a rare neuroimmune disorder and what kind of medical care a person should seek if they are experiencing these symptoms. The experts then describe the process of diagnosing these disorders and what tests should b...

SRNA is joined by Dr. Philippines Cabahug and Dr. Jacqueline A. Nicholas for a podcast on "Everything You Need to Know About Spasticity and How It's Treated . ” The experts define spasticity and tone, and they discuss the causes of spasticity. Treatment options are discussed, as well as differences between individual treatment goals. The experts describe the benefit of spasticity and the timeline...

SRNA is joined by Dr. Amanda Henderson and Dr. Elias Sotirchos for a podcast on "Optic Neuritis: When is just ON and when does it mean more?" The medical experts begin by explaining what optic neuritis is, the symptoms, and how it is diagnosed. Treatments, both acute and ongoing, are discussed, as well as circumstances surrounding relapses. The medical experts then discuss ON in the context of oth...

SRNA is joined by medical experts Dr. Carlos Pardo and Dr. Bardia Nourbakhsh for a podcast on Fatigue and Rare Neuroimmune Disorders. The experts begin by describing the different causes and types of fatigue. They then discuss treatment options for people experiencing fatigue, both medicated and natural. How to manage the everyday effects of fatigue - whether it's at work, school, home, etc. - is...

The Siegel Rare Neuroimmune Association (SRNA) is joined by Priya Duggal, PhD, MPH to discuss the Genetic Study of Acute Flaccid Myelitis (AFM) being conducted at Johns Hopkins. Dr. Duggal discusses the eligibility of participants for the study, the process for how to enroll, and what to expect as a participant. She also discusses what researchers are hoping to learn about the genetic aspect of AF...

The TMA is joined by Dr. Jonathan Cheng from Children’s Medical Center and UT Southwestern Medical Center and Dr. Mitch Seruya Children’s Hospital Los Angeles. The surgeons discuss nerve transfers and how they are used for individuals with AFM. They talk about risks of surgery as well as the post-surgery recovery process. Dr. Cheng and Dr. Seruya also discuss the role of insurance in covering nerv...