SRNA Soundwaves

Latest Episodes:

ABCs of NMOSD 404. All Things Relapses Oct 27, 2023

Show notes

SRNA's Krissy Dilger was joined by Dr. Hamza Coban to discuss neuromyelitis optica spectrum disorder (NMOSD) relapses. They discussed distinguishing between true relapses, pseudo relapses, and Uhthoff's phenomenon. Dr. Coban discussed the importance of early diagnosis and prompt treatment to prevent severe and debilitating symptoms. He described various treatments to prevent relapses. He also talked about the timing of relapses and when to consider switching therapies.

Ask the Expert 1111. Dr. Anderson's Fellowship Research Oct 18, 2023

Show notes

For this episode of “Ask the Expert: Research Edition,” Dr. GG deFiebre of SRNA was joined by Dr. Monique Anderson. In 2023, Dr. Monique Anderson was awarded a research grant funded through the Pauline H. Siegel Eclipse Fund of SRNA. Dr. Anderson described the study, the background, and what led to the development of this particular research project, which is investigating whether novel neuronal biomarkers within exosomes are found in the blood of patients with transverse myelitis. Dr. Anderson discussed the possible impact of this research on the areas of genetics and diagnostic criteria.

Ask the Expert 1110. Can Do MS | Take Charge and Coaching Series Oct 13, 2023

Show notes

Krissy Dilger of SRNA was joined by Kathy Costello of Can Do MS for an “Ask the Expert” podcast on "Can Do MS: TAKE CHARGE® and Coaching Series." Kathy began by explaining the history and mission of the organization Can Do MS. She then discussed why Can Do MS partnered with SRNA to bring some of its programs to the rare neuroimmune community. Finally, Kathy described the goals and logistics of the TAKE CHARGE® program and the Coaching Series.

ABCs of NMOSD 403. I-CAN, A Study of Inebilizumab in Children with AQP4+ NMOSD Sep 06, 2023

Show notes

For this “ABCs of NMOSD” episode, Rebecca Whitney of SRNA was joined by Dr. Michael Levy. Dr. Levy gave an overview of I-CAN, a Phase 2 study of inebilizumab in children with aquaporin-4 positive neuromyelitis optica spectrum disorder or NMOSD. As one of the principal investigators for the study, he shared details about inclusion criteria and inebilizumab, brand name Uplizna™. Dr. Levy also discussed what someone can expect if they choose to participate in this trial, how participation would impact someone’s current treatment, and the timeline of this trial. Additional information is available here:

⁠https://wearesrna.org/clinical-studies-and-trials/study-of-inebilizumab-in-pediatric-subjects-with-neuromyelitis-optica-spectrum-disorder/⁠

⁠https://clinicaltrials.gov/study/NCT05549258?term=NCT05549258&aggFilters=status:not%20rec&rank=1

Community Meets Clinic 101. Drs. Kelsey Poisson and Camille Wilson Aug 23, 2023

Show notes

For this episode of “Community Meets Clinic,” Rebecca Whitney of SRNA was joined by Dr. Kelsey Poisson and Dr. Camille Wilson of Nationwide Children's Hospital in Columbus, Ohio. Dr. Kelsey Poisson shared what led her to pediatric neurology and neuroimmunology, as well as her work researching social determinants of health and pediatric neuromyelitis optica spectrum disorder (NMOSD). Dr. Wilson discussed her work as a clinical psychologist with specialty training in neuropsychology. She spoke about her interest in long-term outcomes from a neurocognitive perspective of people who experience events with a neuroimmune basis. Next, they gave an overview of the multidisciplinary team at Nationwide Children's Hospital and which specialists a new patient might expect to see. Dr. Poisson and Dr. Wilson also described how they look after themselves and stay grounded. Finally, they provided details on Neuroimmune Family Education Day which will take place on September 9, 2023. You can view the medical profiles of our guests here:

https://www.nationwidechildrens.org/find-a-doctor/profiles/kelsey-e-poisson

https://www.nationwidechildrens.org/find-a-doctor/profiles/camille-s-wilson

Dr. Poisson is a board-certified child neurologist at Nationwide Children's Hospital and assistant professor of Clinical Pediatrics and Neurology at The Ohio State University College of Medicine. She received her medical degree from Wake Forest School of Medicine prior to completing her Child Neurology residency at Cincinnati Children’s Hospital Medical Center. She pursued a fellowship in pediatric and adult neuroimmunology at the University of Alabama at Birmingham and Children’s of Alabama prior to joining the team at Nationwide Children’s Hospital. Her clinical and research interests include pediatric neuromyelitis optica spectrum disorder, social determinants of health, transitions of care to adulthood, and long-term quality of life in pediatric-onset multiple sclerosis.

Dr. Wilson is a board certified clinical neuropsychologist. She graduated with a doctorate in clinical psychology from the University of Maryland, Baltimore County. She completed a predoctoral clinical psychology internship and postdoctoral fellowship at Nationwide Children’s Hospital with a specialization in pediatric neuropsychology. She is an assistant clinical professor in the Department of Pediatrics at the Ohio State University. She is actively involved in clinical research to better understand neurocognitive and psychosocial functioning of individuals affected by neuroimmune diseases. She cares deeply for helping patients and families learn how to navigate their diagnosis to achieve the best outcomes at home, school, and their community.

Ask the Expert 1109. Disability and Rare Neuroimmune Disorders Part 2 | Accessibility and Disability Pride Jul 24, 2023

Show notes

Dr. Cyrena Gawuga returned to speak with Dr. GG deFiebre of SRNA for an “Ask the Expert” episode titled "Disability and Rare Neuroimmune Disorders Part 2: Accessibility and Disability Pride." Dr. Gawuga discussed accessibility, accommodations for employment and education, and inclusion in classrooms. She shared possible solutions for a lack of accommodations in health care settings. Finally, Dr. Gawuga described the meaning of Disability Pride Month.

ABCs of NMOSD 402. Sexual Dysfunction and NMOSD Jul 11, 2023

Show notes

Warning: This presentation contains adult language and content. It is not suitable for anyone under the age of 18.In this episode of “ABCs of NMOSD” titled, “Sexual Dysfunction and NMOSD,” Krissy Dilger of SRNA was joined by Dr. Philippines Cabahug. Dr. Cabahug defined the types of sexual dysfunction for people who have impairment in the spinal cord. She summarized treatments that are available for men and women. She discussed considerations for mobility and whether NMOSD may affect fertility. Finally, Dr. Cabahug described physical rehabilitation that can improve sexual dysfunction and how to choose a health care provider to assist with evaluation.

ADEM Academy 103. Building Your Healthcare Team for Successful Symptom Management for Those with ADEM Jun 20, 2023

Show notes

Dr. Linda Nguyen and Dr. Benjamin Greenberg joined Dr. GG deFiebre of SRNA for the third episode of “ADEM Academy.” This episode is titled “Building Your Healthcare Team for Successful Symptom Management for Those with ADEM.” Dr. Nguyen and Dr. Greenberg discussed physical, occupational, and speech therapy for the beginning and duration of the recovery process. They recommended types of doctors for a newly diagnosed person to prioritize and special considerations for someone who tests positive for either the MOG or anti-aquaporin-4 antibody. They also shared advice on choosing a medical professional and the importance of having early conversations with a hospital social worker and the insurance company to identify options for inpatient rehabilitation before discharge to that location. Next, they explained the ways that mental health professionals can help people to be aware of relapse signs and manage potential behavioral issues or emotional strain. In conclusion, Dr. Nguyen and Dr. Greenberg provided a summary of care for a patient with ADEM, five or ten years down the line and beyond.

ADEM Academy 102. Adult ADEM Jun 12, 2023

Show notes

Krissy Dilger of SRNA and Peter Fontanez from The MOG Project were joined by Dr. Farrah Mateen for the second episode of “ADEM Academy,” an ongoing podcast series about ADEM or acute disseminated encephalomyelitis. This episode is titled, “Adult ADEM.” Dr. Mateen discussed how adults typically present with ADEM, the diagnostic process, and how it differs in other stages of life. She explained how ADEM can affect adults cognitively, psychologically, and behaviorally, as well as considerations for geriatric patients. Dr. Mateen also described strategies for patients who have MOGAD, bowel and bladder issues, sexual dysfunction, and summarized the diagnostic and treatment process. The episode ended with questions from the online audience.

Ask the Expert 1108. Disability and Rare Neuroimmune Disorders | Part 1 Jun 05, 2023

Show notes

Dr. GG deFiebre of SRNA was joined by Dr. Cyrena Gawuga for an “Ask the Expert” podcast on "Disability and Rare Neuroimmune Disorders." Dr. Gawuga began by describing how medical conditions like rare neuroimmune disorders are related to disability. She gave an overview of language and models for disability, and how these impact our views of disability. She shared how her experience with this identity has changed over time. Finally, Dr. Gawuga offered suggestions for connecting with others in the community, as well as navigating sensitive conversations with family or friends.

Our TOPPODCAST Picks

Follow Us

Stay Connected

Related Podcasts

Links

Stay Connected