Best Siegel Rare Neuroimmune Association Srna Podcasts (2025)

1
602. NMOSD and Romantic Relationships 58:49

2M ago58:49

58:49

In this episode of "ABCs of NMOSD," host Landy Thomas, joined by Doug Newby, Heather Dawn Newbie, and Caitlyn Flickinger, discussed the impact of NMOSD on romantic relationships. The guests shared their personal experiences with relationships and how they manage living with NMOSD [00:02:27]. They also addressed how they met, support each other duri…

1
Ask the Expert 1312. Parenting is Hard | Part 6 47:11

3M ago47:11

47:11

In part six of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Krissy Dilger of SRNA was joined by Barbara Babcock, a family therapist from the UK's National Health Service, to discuss the role of siblings in families with a child diagnosed with a rare neuroimmune disorder. Barbara shared findings from her research on how s…

1
Ask the Expert 1311. Understanding Myelitis: Efforts to Update Diagnostic Criteria 35:41

3M ago35:41

35:41

In this episode of the SRNA "Ask the Expert" podcast moderated by Dr. GG deFiebre, Dr. Kyle Blackburn and Dr. Benjamin Greenberg discussed the need for updated diagnostic criteria for myelitis. Dr. Blackburn explained the term myelitis and the importance of precise terminologies for accurate diagnoses and research [00:05:10]. Dr. Greenberg elaborat…

1
Ask the Expert 1310. Prevention and Treatment of Skin Breakdown 1:12:10

4M ago1:12:10

1:12:10

Krissy Dilger of the Siegel Rare Neuroimmune Association (SRNA) was joined by experts Janet Dean, MS, RN, CRRN, CRNP and Florence Hanssen, RN to discuss skin health and the prevention of skin breakdown. The conversation covered the structure of the skin and how paralysis affects skin health [00:01:48]. Key topics included the role of daily skin che…

1
Ask the Expert 1309. Parenting is Hard | Part 5 39:35

4M ago39:35

39:35

At the end of this mini-series, we will host a Q&A episode where Barbara will answer questions from the community. To submit your question, please visit https://srna.ngo/submit In part five of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Krissy Dilger of SRNA was joined by Barbara Babcock to further explore her research …

1
Ask the Expert 1308. Parenting is Hard | Part 4 26:09

4M ago26:09

26:09

At the end of this mini-series, we will host a Q&A episode where Barbara will answer questions from the community. To submit your question, please visit https://srna.ngo/submit In the fourth part of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Krissy Dilger of SRNA continued her conversation with Barbara Babcock. In this…

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Ask the Expert 1307. Parenting is Hard | Part 3 29:54

4M ago29:54

29:54

At the end of this mini-series, we will host a Q&A episode where Barbara will answer questions from the community. To submit your question, please visit https://srna.ngo/submit In the third part of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Krissy Dilger of SRNA was joined by Barbara Babcock to further explore her rese…

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Ask the Expert 1306. Community Spotlight | Roopa Ramamoorthi, PhD and Marie Abrego 41:41

5M ago41:41

41:41

In this "Community Spotlight Edition" of "Ask the Expert," Landy Thomas of SRNA talked with Marie Abrego and Dr. Roopa Ramamoorthi about visual impairment and their collaborative book of poetry, Rare Visions, published through the Ipsen Foundation. Dr. Ramamoorthi shared her inspiration for the collection of work from individuals who have been diag…

1
Ask the Expert 1305. FES 101 40:51

5M ago40:51

40:51

In this episode of "Ask the Expert," Dr. Matthew Bellman joined Dr. GG deFiebre of SRNA to explain the basics of functional electrical stimulation (FES) and its applications. Dr. Bellman outlined how FES differs from other electrical stimulation techniques and its role in improving mobility for those with neuroimmune disorders [00:03:35]. He discus…

1
Ask the Expert 1304. Parenting is Hard | Part 2 14:36

5M ago14:36

14:36

At the end of this mini-series, we will host a Q&A episode where Barbara will answer questions from the community. To submit your question, please visit https://srna.ngo/submit In the second part of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Barbara Babcock shared more about her research on how parents navigate the nee…

1
Ask the Expert 1303. Parenting is Hard | Part 1 29:04

5M ago29:04

29:04

At the end of this mini-series, we will host a Q&A episode where Barbara Babcock will answer questions from the community. To submit your question, please visit: https://srna.ngo/submit In the first part of the “Ask the Expert, Research Edition” mini-series, “Parenting is Hard,” Barbara Babcock discussed the challenges faced by parents raising a ch…

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Ask the Expert 1302. Pelvic Floor Therapy for Bladder and Bowel Management 29:09

8M ago29:09

29:09

Krissy Dilger of SRNA moderated this "Ask the Expert" episode, “Pelvic Floor Therapy for Bladder and Bowel Management,” featuring Jessica Ekberg, a certified pelvic floor therapist. Jessica explained the various conditions treated by pelvic floor therapy, emphasizing the importance of posture and breathing [00:01:05]. She discussed how pelvic floor…

1
Ask the Expert 1301. Vaccines and Immunosuppression 21:11

10M ago21:11

21:11

In this episode of "Ask the Expert," Dr. Eoin Flanagan joined Dr. GG deFiebre of SRNA. Dr. Flanagan explained how immunosuppressive medications impact the immune system and the efficacy of vaccines [00:02:45]. He discussed the primary concerns and risks of vaccinating individuals on these therapies, including avoiding live vaccines and the need for…

1
601. Body Dysmorphia 37:06

10M ago37:06

37:06

In the "ABCs of NMOSD" episode, Landy Thomas of SRNA was joined by Heather Dawn Sowalla and Dr. Meghan Beier to discuss post-diagnosis body dysmorphia in NMOSD patients [00:00:12]. Heather shared her misdiagnosis journey, the impact of steroids, and her coping mechanisms [00:06:24]. Dr. Beier highlighted the importance of finding a supportive commu…

1
Ask the Expert 1216. Transcutaneous Spinal Stimulation 24:53

1y ago24:53

24:53

In this "Ask the Expert" episode, Dr. GG deFiebre of SRNA was joined by Dr. Rebecca Martin, who detailed the mechanism and benefits of transcutaneous spinal cord stimulation (TSS). Dr. Martin explained how TSS, a non-invasive method, aims to amplify spinal cord excitability and improve neurological functions like movement and sensation [00:01:25]. …

1
Ask the Expert 1215. Women's Health within Neuroimmunology 15:00

1y ago15:00

15:00

In this "Ask the Expert" episode titled, "Women's Health within Neuroimmunology," Dr. Sonia Singh joined Krissy Dilger of SRNA to share women's health concerns within the context of neuroimmunology, focusing on issues like fertility and pregnancy for those with rare neuroimmune disorders [00:01:20]. Dr. Singh discussed how certain conditions, such …

1
Ask the Expert 1214. Self Identity and Finding Meaning Following Diagnosis 32:07

1y ago32:07

32:07

In this "Ask the Expert" episode titled, "Self Identity and Finding Meaning Following Diagnosis," Krissy Dilger of SRNA spoke with Susan Y. Wegener, LCSW, a licensed clinical social worker, about coping with a chronic diagnosis and its emotional adjustments, referencing Kübler-Ross’ stages of grief [00:03:45]. Susan discussed the importance of self…

1
504. Managing the Dread of Relapse 49:36

1y ago49:36

49:36

In the "ABCs of NMOSD" episode titled, "Managing the Dread of Relapse," Landy Thomas of SRNA was joined by Heather Dawn Sowalla. Heather shared her journey with neuromyelitis optica spectrum disorder (NMOSD) [00:01:54] and discussed the fear of relapse associated with the condition [00:14:04]. She described how long-term misdiagnosis and numerous f…

1
503. Social Reintegration Following an NMOSD Diagnosis 52:45

1y ago52:45

52:45

In the “ABCs of NMOSD” episode titled, “Social Reintegration Following an NMOSD Diagnosis,” Landy Thomas of SRNA and Kim Jackson-Matthews discussed social reintegration following an NMOSD diagnosis [00:00:14]. Kim shared her diagnosis story, including the onset of symptoms and the challenges she faced [00:04:42]. They talked about the emotional imp…

1
Ask the Expert 1213. Operant Conditioning Rehabilitation Studies 15:51

1y ago15:51

15:51

In this episode titled, "Operant Conditioning Rehabilitation Studies," part of the "Ask the Expert: Research Edition" series, Krissy Dilger of SRNA was joined by Dr. Aiko Thompson. Dr. Thompson explained the fundamental principles of operant conditioning and its application in enhancing motor function and sensory pathways in individuals with spinal…

1
Ask the Expert 1212. The Role of Physicians and Patients in Legislative Advocacy 36:03

1+ y ago36:03

36:03

In this episode of "Ask the Expert," hosted by Krissy Dilger of SRNA, Dr. Shuvro Roy talked about the importance of legislative advocacy in healthcare [00:01:10]. Dr. Roy discussed how physicians can engage in legislative advocacy by sharing their practice stories and providing technical expertise [00:05:05]. He emphasized the crucial role of patie…

1
502. Men and NMOSD 1:07:16

1+ y ago1:07:16

1:07:16

In this episode of "ABCs of NMOSD," Landy Thomas of SRNA hosted a discussion about the experiences of men who are living with neuromyelitis optica spectrum disorder (NMOSD). Doug Kirby and Andrew Jopson shared their diagnosis journeys, highlighting the physical and emotional challenges they faced [00:04:20]. They delved into the impact of the disor…

1
Ask the Expert 1211. Community Spotlight - Kim Harrison 1:15:34

1+ y ago1:15:34

1:15:34

In this episode of "Ask the Expert, Community Spotlight Edition," Lydia Dubose of SRNA spoke with Kim Harrison about her journey with transverse myelitis (TM), adaptive sports, and challenges she has faced since her diagnosis [00:01:25]. Kim highlighted the importance of community support systems in her life [00:11:38]. She discussed managing sympt…

1
Ask the Expert 1210. Community Spotlight - Paula Jones 29:30

1+ y ago29:30

29:30

In this "Ask the Expert, Community Spotlight" episode, Krissy Dilger of SRNA was joined by Paula Jones, a filmmaker from New Zealand, who discussed her journey with transverse myelitis (TM) and how it has impacted her life and career [00:01:34]. She shared her diagnosis story, detailing the sudden onset of symptoms and the challenges she faced duri…

1
Ask the Expert 1209. What is ULTOMIRIS? 18:56

1+ y ago18:56

18:56

Dr. Michael Levy joined Dr. GG deFiebre of SRNA for the “Ask the Expert” podcast episode titled "What is ULTOMIRIS?" Dr. Levy explained that ravulizumab (ULTOMIRIS) is the newest FDA-approved medication for neuromyelitis optica spectrum disorder (NMOSD), offering a longer dosing interval compared to eculizumab (Soliris) [00:01:08]. Dr. Levy discuss…

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Ask the Expert 1208. MOGcast | Understanding Cortical Encephalitis 1:00:22

1+ y ago1:00:22

1:00:22

This “MOGcast” edition of the “Ask the Expert” podcast series is a collaborative episode titled, “MOGcast 2: Understanding Cortical Encephalitis.” Dr. Eoin Flanagan and Dr. Cristina Valencia Sanchez joined Julia Lefelar of The MOG Project and Dr. GG deFiebre of SRNA to discuss cortical encephalitis, its symptoms, and the connection to MOG antibody …

1
Ask the Expert 1207. MOGcast - The Latest in Treatments from an Adult and Pediatric Perspective 1:04:49

1+ y ago1:04:49

1:04:49

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. Gom…

1
Ask the Expert 1206. Community Spotlight - Voices of SRNA Volunteers | Part 2 33:20

1+ y ago33:20

33:20

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:…

1
Ask the Expert 1205. Community Spotlight - Voices of SRNA Volunteers | Part 1 37:00

1+ y ago37:00

37:00

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 ne…

1
Ask the Expert 1204. Community Spotlight | Ilona Williams 43:47

1+ y ago43:47

43:47

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 diagno…

1
Ask the Expert 1203. Community Spotlight | Rick Telander 42:58

1+ y ago42:58

42:58

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 rehabili…

1
501. Transitioning from Pediatric to Adult Care with NMOSD 29:15

1+ y ago29:15

29:15

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…

1
Ask the Expert 1202. Increased Intracranial Pressure in Pediatric MOG Antibody Disease 22:33

2y ago22:33

22:33

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 …

1
Ask the Expert 1115. A Conversation about Grief and Loss with Chris Lopardi 15:57

2y ago15:57

15:57

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 Lop…

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Ask the Expert 1114. Neurosarcoidosis and Rare Neuroimmune Disorders 26:28

2y ago26:28

26:28

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…

1
Ask the Expert 1113. Acute Treatments and Rare Neuroimmune Disorders 34:30

2y ago34:30

34:30

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, an…

1
Ask the Expert 1112. Social Determinants of Health in Rare Neuroimmune Disorders 25:37

2y ago25:37

25:37

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 …

1
405. Neuro-Ophthalmology and NMOSD 24:16

2y ago24:16

24:16

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 d…

1
404. All Things Relapses 36:14

2y ago36:14

36:14

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 va…

1
Ask the Expert 1111. Dr. Anderson's Fellowship Research 23:32

2y ago23:32

23:32

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 projec…

1
Ask the Expert 1110. Can Do MS | Take Charge and Coaching Series 18:17

2y ago18:17

18:17

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. Final…

1
403. I-CAN, A Study of Inebilizumab in Children with AQP4+ NMOSD 15:34

2y ago15:34

15:34

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 inebi…

1
Ask the Expert 1109. Disability and Rare Neuroimmune Disorders Part 2 | Accessibility and Disability Pride 1:08:06

2+ y ago1:08:06

1:08:06

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 acco…

1
402. Sexual Dysfunction and NMOSD 19:30

2+ y ago19:30

19:30

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 cor…

1
Ask the Expert 1108. Disability and Rare Neuroimmune Disorders | Part 1 1:01:42

2+ y ago1:01:42

1:01:42

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 disabil…

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Ask the Expert 1107. Update: Study to Investigate the Safety of the Transplantation of Human Glial Restricted Progenitor Cells into Patients with Transverse Myelitis 17:37

2+ y ago17:37

17:37

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…

1
Ask the Expert 1106. CosMOG | Clinical Trial for MOGAD Treatment 20:39

2+ y ago20:39

20:39

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, an…

1
Ask the Expert 1105. What to Expect Living with NMOSD and MOGAD Long-Term 24:36

2+ y ago24:36

24:36

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 an…

1
Ask the Expert 1104. Community Spotlight | Paul Turner 36:16

2+ y ago36:16

36:16

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.…

1
Ask the Expert 1103. Community Spotlight | Melanie Flood 56:15

2+ y ago56:15

56:15

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, re…

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Siegel Rare Neuroimmune Association Srna Podcasts

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