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)." 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 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.

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 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.

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 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.

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 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.

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, 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.

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 findings from the study and the reasons why studying telehealth is important. Finally, Dr. Harder discusses implications for future research.

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 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.

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 relationships. She touches on her fears and her hopes for the future. Finally, Kristen talks about how NMOSD has affected her as a parent.

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 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.

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 technology for people who are vision impaired, and they talk about driving and transportation. Finally, the experts relay the nuances of adapting one's employment following vision impairment.