SRNA Soundwaves

Latest Episodes:

Ask the Expert 1107. Update: Study to Investigate the Safety of the Transplantation of Human Glial Restricted Progenitor Cells into Patients with Transverse Myelitis May 31, 2023

Show notes

Dr. Benjamin Greenberg joined Dr. GG deFiebre of SRNA on our podcast series, “Ask the Expert: Research Edition.” This episode is titled “Update: Study to Investigate the Safety of the Transplantation of Human Glial Restricted Progenitor Cells into Patients with Transverse Myelitis.” Dr. Greenberg discussed the background and status of the study. It is the first of its kind to look at the potential use of stem cells to repair the damage in spinal cords affected by myelitis, inflammation in the spinal cord. He also explained the screening process, enrollment, and next steps of the study.

Ask the Expert 1106. CosMOG | Clinical Trial for MOGAD Treatment Apr 24, 2023

Show notes

For this episode of “Ask the Expert: Research Edition,” Krissy Dilger of SRNA was joined by Dr. Michael Levy. Dr. Levy gave an explanation of MOG antibody disease (MOGAD) and an overview of CosMOG, an ongoing clinical trial of rozanolixizumab for MOGAD treatment. He shared details about safety issues, the design of the trial, inclusion criteria, and where someone could learn more about the trial and participation.

Ask the Expert 1105. What to Expect Living with NMOSD and MOGAD Long-Term Apr 19, 2023

Show notes

Krissy Dilger of SRNA was joined by Dr. Benjamin Osborne for an “Ask the Expert” podcast on "What to Expect Living with NMOSD and MOGAD Long-Term." Dr. Osborne began by explaining treatments available for both neuromyelitis optica spectrum disorder (NMOSD) and MOG antibody disease (MOGAD). He discussed how he as a clinician evaluates a treatment and under which conditions he would recommend a person change or end long-term therapies. Finally, Dr. Osborne provided information on how a symptom differs from a medication side effect and suggested supplements and lifestyle practices that may improve long-term quality of life.

Ask the Expert 1104. Community Spotlight | Paul Turner Apr 05, 2023

Show notes

The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. For this episode, Paul Turner joined Dr. GG deFiebre of SRNA to talk about his experience with transverse myelitis (TM). They discussed his initial symptoms and diagnosis, rehabilitation, treatment, and goals.

Ask the Expert 1103. Community Spotlight | Melanie Flood Mar 14, 2023

Show notes

The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. For this episode, Melanie Flood joined Krissy Dilger of SRNA to talk about her experience with neuromyelitis optica spectrum disorder (NMOSD) with Sjögren's syndrome. They discussed her initial symptoms and diagnosis, treatments, rehabilitation, and life today.

Ask the Expert 1102. COVID-19 and the Risk of CNS Demyelinating Diseases Feb 20, 2023

Show notes

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

Ask the Expert 1101. What do we know about holistic therapies to manage symptoms of rare neuroimmune disorders? Jan 30, 2023

Show notes

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.

ADEM Academy 101. Pediatric and Adolescent ADEM Jan 23, 2023

Show notes

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.

ABCs of NMOSD 401. Mental Health and NMOSD Jan 16, 2023

Show notes

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.

Ask the Expert 1011. Health Disparities and Rare Neuroimmune Disorders Sep 15, 2022

Show notes

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.

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