2021 Podcasts Recap
SRNA has two podcast series for those diagnosed with a rare neuroimmune disorder, relatives and caregivers, and medical experts. For our Ask the Expert podcast series, we bring on experts in the field to share the latest knowledge and answer questions from our community. Podcasts have covered topics such as vaccinations and rare neuroimmune disorders, rehabilitation, symptom management, and clinical trials. Our 2021 Ask the Expert podcast series is sponsored in part by Alexion – AstraZeneca Rare Disease, Genentech, and Horizon Therapeutics. Thus far, in 2021 we have hosted eleven Ask the Expert podcast episodes. SRNA also hosts the ABCs of NMOSD podcast series, in collaboration with The Sumaira Foundation for NMO, the Connor B. Judge Foundation, and The Guthy-Jackson Charitable Foundation. This series is made possible through a patient education grant from Horizon Therapeutics. For this series, we bring together the latest information and research about all things NMOSD, from diagnosis and treatment to quality of life and what it’s like to live with NMOSD. Throughout the series, we invite medical experts and researchers to share the latest up-to-date research and clinical knowledge with us, answer questions about the diagnostic process, biomarkers, new therapies, relapses, and managing symptoms such as pain and fatigue. In 2021, we have held nine ABCs of NMOSD podcast episodes.
Below is an overview of the podcasts we’ve hosted in 2021:
Ask the Expert
1. Dr. Michael Levy’s Research at The NMO Clinic and Research Laboratory at Mass General
Dr. Michael Levy joined SRNA for this episode of our Ask the Expert Podcast Series: Research Edition. 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 the research he is conducting on genetics and transverse myelitis. Dr. Levy explains the animal models that are being developed to study aquaporin-4 in neuromyelitis optica spectrum disorder and T-cells in MOG antibody disease. Finally, Dr. Levy discusses upcoming clinical trials that will take place soon for people with MOG antibody disease and a future study on how diet affects people with rare neuroimmune disorders.
2. Study on Pediatric Teleneuropsychology
For this episode of our Ask the Expert Podcast Series: Research Edition, Rebecca Whitney was 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 findings from the study and the reasons why studying telehealth is important. Finally, Dr. Harder discusses implications for future research.
3. My child has just been diagnosed with AFM. What do I need to know?
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). Dr. Hopkins begins by explaining the acute treatments typically administered after an AFM diagnosis and what families should expect during this time. She and Sarah Stoney discuss the importance of the care team in supporting the family during both the acute phase and long-term. Sarah Stoney describes the role of a social worker in helping with applying for insurance coverage, creating 504 plans for school, and many other supportive actions. Finally, the experts stress the role of child life specialists in helping a child and their siblings understand their diagnosis and participate in their care.
4. Behavioral and Psychological Changes in Demyelinating Conditions, Part 2
SRNA hosted this Ask the Expert Podcast, with experts Dr. Cindy Wang, Dr. Alison Wilkinson-Smith, and Denise 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 psychology and psychiatry play a role in developing treatment plans and which treatments are most effective. Helping children with these disorders succeed in school environments is discussed. Finally, the experts talk about ways in which adults and children with these disorders can advocate for their care.
5. The Role of CDC and Public Health in AFM Surveillance | Part I
SRNA hosted this Ask the Expert podcast, in collaboration with Centers for Disease Control and Prevention. Rebecca Whitney was 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 AFM cases are diagnosed, reported to public health agencies, sent to CDC, and classified. They describe the role of each organization/agency in reporting a case and the stages each case goes through. The experts define important terms such as surveillance, nationally notifiable, and mandatory reporting. Finally, the experts reiterate the importance of reporting cases for public health purposes, the need for clinicians to be aware of reporting, and the ways in which the case definition of AFM has evolved since 2014.
6. The Role of CDC and Public Health in AFM Surveillance | Part II
SRNA hosted this Ask the Expert podcast, in collaboration with Centers for Disease Control and Prevention. Rebecca Whitney was once again 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 outbreak of AFM cases is expected in 2021, along with the potential causes of AFM, and how an outbreak is defined. They talk about what they are doing to prepare for possible new cases of AFM and why preventing new cases is difficult. The experts explain the importance of surveillance and research in improving outcomes for future children that are diagnosed with AFM, including the importance of ICD 10 codes. Finally, the experts discuss the distinction between the surveillance definition and the diagnostic criteria for AFM and how these criteria evolve over time.
7. Transverse Myelitis: Diagnosis and Treatment Guidelines
SRNA hosted this Ask the Expert podcast, with medical experts Dr. Ram Narayan and Dr. Elena Grebenciucova. The experts began by explaining what transverse myelitis is, signs and symptoms, and how the diagnosis is made. They discussed acute treatments and how they decide which treatments to use for each patient. Finally, the experts talked about rehabilitation and what someone should do if they experience decompensation.
8. Transverse Myelitis: Symptom Management
Krissy Dilger of SRNA was joined by Dr. Ram Narayan and Dr. Elena Grebenciucova for this Ask the Expert. The experts discuss medications and other treatment options for symptoms such as pain, spasticity, fatigue, and more. They talk about the different healthcare providers who form a team to help a person with TM receive comprehensive care. Finally, the experts discuss vaccinations and whether the COVID-19 vaccine is recommended for people with TM.
9. Talking With Your Child About a Difficult Diagnosis
SRNA’s Rebecca Whitney hosted this Ask the Expert podcast, a special edition in collaboration with CDC, with pediatric neuropsychologist Dr. Lana Harder. Dr. Harder discusses strategies for talking to your child about the diagnostic tests that are used at the onset of a rare neuroimmune disorder and how they may be invasive or painful. She explains the transition of care as a child grows older and closer to adulthood and how to ensure your child is able to ask questions pertaining to their medical care. Dr. Harder talks about discussing concepts such as disability and adaptive activities with your child and what the future might hold for someone with one of these disorders. Finally, Dr. Harder discusses the emotions children might experience as part of this diagnosis and navigating your own emotions as a parent while talking with your child about their disorder.
10. Acute Disseminated Encephalomyelitis: Diagnosis and Treatment Guidelines
Krissy Dilger of SRNA was joined by Dr. Farrah Mateen and Dr. Cindy Wang for this Ask the Expert podcast. The experts begin by providing an overview of ADEM, including a brief definition, signs and symptoms in the acute phase, and potential causes. The physicians then discuss diagnostic tests and how other disorders are ruled out. They talk about acute treatments and long-term care for people with ADEM. Finally, the experts provide information on research being conducted on ADEM.
11. Temperature Sensitivity and Rare Neuroimmune Disorders
Krissy Dilger of SRNA was joined by Dr. Gretchen Hawley for this Ask the Expert podcast. Dr. Gretchen began by explaining why people with rare neuroimmune disorders may experience heat and cold sensitivity. She discussed how temperature regulation plays a role and the effects it can cause on someone with a rare neuroimmune disorder. Finally, Dr. Gretchen provided various treatment options and coping mechanisms for temperature sensitivity.
ABCs of NMOSD
1. Complementary Therapies and NMOSD
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 this ABCs of NMOSD podcast. The experts begin by explaining what complementary therapy is and what common approaches are used. They discuss acupuncture, chiropractic procedures, supplements, diet, exercise, and medical marijuana. The experts provide information on functional electrical stimulation, a possible complementary therapy at the acute stage of an inflammatory attack. Finally, the experts discuss how mindfulness can be helpful in overall health.
2. NMOSD Stories: Kristen
GG deFiebre of SRNA was 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 relationships. She touches on her fears and her hopes for the future. Finally, Kristen talks about how NMOSD has affected her as a parent.
3. NMOSD Stories: Ireland
GG deFiebre of SRNA was 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, her personal identity, and the transition from childhood to being an adult living with this disorder. She touches on her fears and her hopes for the future. Finally, Ireland talks about how she explains NMOSD to others in her life.
4. COVID-19 and NMOSD
For this ABCs of NMOSD podcast, GG deFiebre of SRNA was 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 should know about receiving one. He talks about the protocol for relapses that occur during the pandemic and the first-line treatments that are used after an attack. Finally, he provides information on whether COVID-19 infection and COVID-19 vaccines have caused relapses or new cases of NMOSD, and he reveals the research that is currently being conducted on this subject.
5. MOGAD and NMOSD – Is MOGAD Part of NMOSD or a Distinct Diagnosis?
GG deFiebre of SRNA was joined by Dr. Eoin Flanagan for this ABCs of NMOSD podcast. Dr. Flanagan outlines the similarities and differences between MOG antibody disease (MOGAD) and neuromyelitis optica spectrum disorder (NMOSD.) He discusses the different treatments for each disorder and how they are distinguished from multiple sclerosis. Dr. Flanagan talks about the history of these disorders and why it is important to differentiate them. Finally, Dr. Flanagan describes how people diagnosed with MOGAD and NMOSD can receive medical care and what they can expect for the future.
6. History, Diagnosis, and Management of NMOSD
Dr. Brian Weinshenker joined GG deFiebre of SRNA and Jacinta Behne of The Guthy-Jackson Charitable Foundation for this ABCs of NMOSD podcast. Dr. Weinshenker began with a history of NMOSD and how the aquaporin-4 antibody was discovered as a biomarker for NMO. He discussed other diagnoses that were historically used before NMOSD was coined, and he discussed the differences between how NMOSD is understood today since Dr. Devic’s first understanding of the disease. Dr. Weinshenker talked about how a diagnosis of NMOSD is made, including the clinical makeup and diagnostic tests used. Finally, Dr. Weinshenker explained the acute and long-term treatments used and symptom management for NMOSD.
7. Pediatric NMOSD, Part I: History and Diagnosis
Rebecca Whitney of SRNA was joined by Dr. Jayne Ness and Dr. Silvia Tenembaum for this ABCs of NMOSD podcast. The experts begin by explaining the history of pediatric NMOSD, including the first known cases and a research paper that was published on the subject. They then discuss how common NMOSD is in pediatric patients and the diagnostic tests used for NMOSD. The experts compare NMOSD and MOGAD in children, including antibody levels, disease course, and treatment protocol. Finally, the experts provide information on differential diagnoses and prognoses.
8. Navigating Treatment Options
Dr. Hesham Abboud joined Dr. Chelsey Judge of The Connor B. Judge Foundation for this ABCs of NMOSD podcast. Dr. Abboud began with an overview of treatments for NMOSD patients experiencing an acute relapse and the timing for introducing these treatments, as well as potential side effects. He talked about factors to consider during the Covid-19 pandemic and strategies for navigating costs and medical insurance. Dr. Abboud outlined each FDA-approved and off-label treatment for relapse prevention and maintenance, possible risks and side effects, potential differences in insurance coverage, and a clinical pharmacist’s role in the selection process. Finally, Dr. Abboud described considerations for a woman who’s considering family planning and how to set up co-treatment with an academic or neuroimmunology center.
9. Insurance and Access to Care in the US
Marissa Shackleton from The Elliot Lewis Center gave an overview of the health care system in the US, including types of insurance, insurance terms commonly used, and ways to get needed medications covered.
You can access all podcasts in our Resource Library. Please stay tuned for more Ask the Expert and ABCs of NMOSD podcasts in 2022!