SRNA Soundwaves

For this episode of “Ask the Expert: Research Edition,” Rebecca Whitney of SRNA was joined by Dr. Michael Levy. Dr. Levy gave a brief overview of one of his recent papers with colleagues that was featured in Frontiers in Neurology, “COVID-19 and the risk of CNS demyelinating diseases: A systematic review.” For this paper, the authors reviewed literature published in English on different platforms around the world where the diagnosis was confirmed usually with aquaporin-4 or MOG antibody testing, including children and adults. They examined whether Covid infections cause inflammatory central nervous system (CNS) demyelinating diseases, including multiple sclerosis, NMOSD, MOG antibody disease, or relapses, and at what rate. You can view the paper here: https://www.frontiersin.org/articles/10.3389/fneur.2022.970383/full

Krissy Dilger of SRNA was joined by Megan Weigel, DNP, 200RYT for an “Ask the Expert” podcast titled “What do we know about holistic therapies to manage symptoms of rare neuroimmune disorders?” Megan began by introducing holistic therapies and integrative medicine. Next, she explained where medical providers can locate information regarding supplements, their interactions with medication, and evidence in medical publications. She described how holistic therapies such as nutrition, mindfulness, yoga, chiropractic care, and acupressure may benefit rare neuroimmune disorders. Megan also emphasized the importance of working with properly educated and licensed providers. Finally, she recommended resources for those who are curious to learn more about these topics.

Dr. GG deFiebre of SRNA and Peter Fontanez from The MOG Project were joined by Dr. Jonathan D. Santoro for the first episode of “ADEM Academy,” an ongoing podcast series about ADEM or acute disseminated encephalomyelitis. This episode is titled “Pediatric and Adolescent ADEM.” Dr. Santoro described the diagnosis process for ADEM, testing, treatments, and antibodies such as MOG-Ab, AQP4-Ab, and NMDA. He discussed symptoms to look for during a possible relapse, as well as rehabilitation, therapy, and ongoing research. Dr. Santoro also answered questions from the online audience.

Dr. Mary Rensel and Dr. Amy Sullivan joined Krissy Dilger of SRNA for an “ABCs of NMOSD” podcast titled, “Mental Health and NMOSD.” The experts began the conversation by sharing how behavioral medicine teams support people who are adjusting to a chronic disease or change of function. They also reviewed some of the tools that can enhance quality of life and address depression, fatigue, and pain levels. These include breathing tools, visualization, body scanning, and mindfulness-based therapy. Finally, Dr. Rensel and Dr. Sullivan discussed support groups and stress relief for care partners and loved ones of people who are receiving care.

Krissy Dilger of SRNA was joined by Dr. Mitzi Joi Williams for an “Ask the Expert” podcast on "Health Disparities and Rare Neuroimmune Disorders.” Dr. Williams began by defining health disparities, individual health, and population health. Next, she explained the importance of social determinants of health. She discussed the ways in which economic, social, and environmental factors impact health and how marginalized populations are traditionally most impacted by disparities. Finally, Dr. Williams shared recommendations for health care providers and advocacy organizations to address or mitigate the impact of some of these health disparities and actively help to bridge these gaps.

Dr. Michael Yeaman and Dr. Terry Smith joined Krissy Dilger of SRNA for an “ABCs of NMOSD” podcast titled, “What is Tolerization?" The experts began by giving an overview of immune detection and protection. They explained how immune tolerance is established. The experts provided information on how immune tolerance could be lost during autoimmune disease. Finally, they discussed how immune tolerance can be restored and how these corrections might be applied to treatments and cures for NMOSD and MOGAD. There are visual slides that accompany this episode. The visual presentation can be found at ⁠https://youtu.be/PtYzqrNi6pg

Dr. GG deFiebre of SRNA was joined by Dr. Benjamin Greenberg for an “Ask the Expert” podcast episode titled, “Immunology of Rare Neuroimmune Disorders Part 3.” Dr. Greenberg began by explaining repair versus recovery in the spinal cord, the brain, and the optic nerves. He discussed how the body naturally remakes myelin and current research on astrocytic scars. He also summarized how an MRI may not correlate with how much function returns. Finally, Dr. Greenberg provided information on ongoing research on repair and stem cells, as well as the risks of stem cell clinics.

Dr. GG deFiebre of SRNA was joined by Andrea Mitchell of the MOG Project for an “Ask the Expert” podcast on "Air Travel with a Disability: Blind and Guide Dog Travel." Andrea began by providing suggestions on how to prepare for a trip and notify an airline about travel with a guide dog. She detailed how to maneuver through security while never separating from the dog, the rights of passengers who have disabilities through the Air Carrier Access Act (ACAA), and resources available from TSA Cares staff and airlines’ Complaint Resolution Officials (CRO). Finally, Andrea described utilizing relief areas at airports, the process of boarding an airplane, flying with a guide dog, and getting off of an airplane.

Helpful resources:

https://www.transportation.gov/airconsumer/passengers-disabilities

https://www.guidedog.org/GD/caresupport/TravelTips.aspx

https://www.seeingeye.org/blog/tips_for_traveling_by_air_with_a_guide_dog.html

In Part 7 of our Q&A series, Dr. Benjamin M. Greenberg, member of SRNA’s Board of Directors and SRNA’s Medical and Scientific Council, discussed COVID-19 vaccinations and the implications for those with rare neuroimmune disorders.

Dr. GG deFiebre of SRNA was joined by Drs. Amy Rosenfeld, Sarah Hopkins, and Katie Lockwood for an Ask the Expert podcast episode titled “An Update on Poliomyelitis.” The experts began by providing an overview of poliovirus and how it causes poliomyelitis. They also discussed the major symptoms of poliomyelitis, the two types of poliovirus vaccines, and how poliomyelitis differs from acute flaccid myelitis (AFM) and transverse myelitis (TM). Finally, the experts gave general recommendations about these vaccines for people who have neuroimmune disorders or who are on immunosuppression.