SRNA Soundwaves

This “MOGcast” edition of the “Ask the Expert” podcast series is a collaborative episode titled, “The Latest in Treatments from an Adult and Pediatric Perspective.” Dr. Elias Sotirchos and Dr. Grace Gombolay joined Julia Lefelar of The MOG Project and Dr. GG deFiebre of SRNA and answered questions from the online audience. Dr. Sotirchos and Dr. Gombolay reviewed acute treatments for MOG antibody d...

The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. In this episode, titled, “Voices of SRNA Volunteers, Part 2,” Minaal Zahid and Doug Kirby joined Lydia Dubose of SRNA. Doug shared his journey with NMOSD, emphasizing the role of volunteers in providing support and education [00:01:49]. Minaal discussed her motivation to volunteer...

The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. In this episode, Alexandra Goulimi and Angela Jackson joined Lydia Dubose of SRNA share their backgrounds and how they got involved with volunteering for SRNA [00:01:43]. Alexandra and Angela discussed their experiences with rare neuroimmune disorders and the support they found thr...

The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. For this episode, Ilona Williams joined Lydia Dubose of SRNA to discuss her journey with neuromyelitis optica spectrum disorder (NMOSD). Ilona described her initial symptoms and the challenges she faced in receiving a correct diagnosis [00:01:22]. Despite experiencing skepticism an...

The "Community Meets Clinic" podcast series introduces clinicians and healthcare personnel specializing in rare neuroimmune disorders. In this episode, Krissy Dilger of SRNA was joined by Dr. Paula Barreras. Dr. Barreras discussed her journey into neuroimmunology, emphasizing the impact of patient interactions [00:01:31]. Her early research focused on misdiagnoses in disorders like transverse myel...

The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. For this episode, Rick Telander joined Dr. GG deFiebre of SRNA to talk about his journey with transverse myelitis (TM). Rick shared about his diagnostic process [00:08:05], the testing that took place, and the treatment and rehabilitation that he received [00:09:25]. He emphasized...

For this “ABCs of NMOSD” episode titled, “Transitioning from Pediatric to Adult Care with NMOSD,” Dr. Jonathan Galli joined Krissy Dilger of SRNA. Dr. Galli provided insights into the disorder and its presentation across age groups, emphasizing the importance of aggressive treatment [00:01:35]. He highlighted differences in treatment approaches and medication availability between pediatric and adu...

For this episode of “Ask the Expert: Research Edition,” "Increased Intracranial Pressure in Pediatric MOG Antibody Disease," Krissy Dilger of SRNA was joined by Dr. Cynthia Wang and Dr. Linda Nguyen. They discussed MOG antibody disease and the significance of MOG antibodies in diagnosis (00:00:02-00:03:36). Dr. Nguyen highlighted the background of the study and how this research focused on determi...

The “Community Spotlight” edition of the “Ask the Expert” podcast series shares the stories of our community members. This episode is part of a special series on grief and loss. Chris Lopardi joined Krissy Dilger of SRNA to share about his family’s experience with acute disseminated encephalomyelitis (ADEM). Chris Lopardi is the father of Mason Lopardi. Chris lost his son, Mason at age seven to AD...

In this "Ask the Expert" episode, Krissy Dilger of SRNA interviewed Dr. Giovanna Manzano about neurosarcoidosis and rare neuroimmune disorders. They explored the definition of neurosarcoidosis, its symptoms, and the diagnostic process, emphasizing the challenges in identifying the condition due to its diverse manifestations. Dr. Manzano delved into the potential causes of neurosarcoidosis, highlig...

Krissy Dilger of SRNA was joined by Drs. John J. Chen and Elias S. Sotirchos for an “Ask the Expert” podcast episode titled “Acute Treatments and Rare Neuroimmune Disorders.” The experts began by providing an overview of treatments for an acute demyelinating attack and how they are administered. They also discussed side effects, safety concerns, and the decision process for escalation. Finally, th...

For this episode of “Ask the Expert,” Krissy Dilger of SRNA was joined by Dr. Elizabeth Wilson. Dr. Wilson discussed her research into how a patient's environment, including life stressors, interacts with their body, genetics, and inflammatory neurologic conditions. She also described the ways that healthcare providers and the community can bridge the gap for those who are negatively affected by h...

Krissy Dilger of SRNA was joined by Dr. Robert Shin. Dr. Shin began by summarizing the role of neuro-ophthalmologists and how they specialize in the intersection of neurology and ophthalmology, and address vision-related issues, including those associated with neuromyelitis optica spectrum disorder (NMOSD). Dr. Shin talked about the tests used to diagnose visual issues. He discussed how distinguis...

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 talk...

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 b...

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...

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 discus...

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 dis...

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. G...

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 fo...

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 fo...

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...

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 ident...

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...

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 a...