Best Siegel Rare Neuroimmune Association Srna Podcasts (2024)

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1210. Community Spotlight - Paula Jones 29:30

15d 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 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 during an…

1
1209. What is ULTOMIRIS? 18:56

1M 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…

1
1208. MOGcast - Understanding Cortical Encephalitis 1:00:22

3M 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
1207. MOGcast - The Latest in Treatments from an Adult and Pediatric Perspective 1:04:49

3M 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…

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1206. Community Spotlight - Voices of SRNA Volunteers | Part 2 33:20

3M 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:…

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

3M 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
1204. Community Spotlight - Ilona Williams 43:47

4M 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…

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1203. Community Spotlight - Rick Telander 42:58

4M 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…

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

4M 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…

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1202. Increased Intracranial Pressure in Pediatric MOG Antibody Disease 22:33

5M 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 …

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1201. A Conversation about Grief and Loss with Lisa McDaniel 27:32

6M ago27:32

27:32

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. Lisa McDaniel joined Krissy Dilger of SRNA to share about her family’s experience with neuromyelitis optica spectrum disorder (NMOSD). Lisa McDaniel’s awareness of rare dis…

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1115. A Conversation about Grief and Loss with Chris Lopardi 15:57

7M 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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1114. Neurosarcoidosis and Rare Neuroimmune Disorders 26:28

8M 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
1113. Acute Treatments and Rare Neuroimmune Disorders 34:30

8M 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
1112. Social Determinants of Health in Rare Neuroimmune Disorders 25:37

8M 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

9M 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…

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404. All Things Relapses 36:14

9M 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…

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1111. Dr. Anderson's Fellowship Research 23:32

9M 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…

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1110. Can Do MS: Take Charge and Coaching Series 18:17

9M 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…

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

11M 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…

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1109. Disability and Rare Neuroimmune Disorders Part 2: Accessibility and Disability Pride 1:08:06

12M 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…

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402. Sexual Dysfunction and NMOSD 19:30

1y ago19:30

19:30

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 wh…

1
1108. Disability and Rare Neuroimmune Disorders Part 1 1:01:42

1y 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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1107. Update: Study to Investigate the Safety of the Transplantation of Human Glial Restricted Progenitor Cells into Patients with Transverse Myelitis 17:37

1y 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
1106. CosMOG - Clinical Trial for MOGAD Treatment 20:39

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

1y 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
1104. Community Spotlight - Paul Turner 36:16

1+ 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
1103. Community Spotlight - Melanie Flood 56:15

1+ 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…

1
1102. COVID-19 and the Risk of CNS Demyelinating Diseases 8:18

1+ y ago8:18

8:18

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 liter…

1
1101. What do we know about holistic therapies to manage symptoms of rare neuroimmune disorders? 42:47

1+ y ago42:47

42:47

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 supplem…

1
401. Mental Health and NMOSD 35:35

1+ y ago35:35

35:35

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 l…

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1011. Health Disparities and Rare Neuroimmune Disorders 17:46

2y ago17:46

17:46

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,…

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304. What is Tolerization? 54:20

2y ago54:20

54:20

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 dis…

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1010. Immunology of Rare Neuroimmune Disorders Part 3 17:57

2y ago17:57

17:57

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 astro…

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1009. Air Travel with a Disability: Blind and Guide Dog Travel 22:51

2y ago22:51

22:51

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 sepa…

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Bonus Track | COVID-19 Vaccines Part VII with Dr. Greenberg 25:36

2y ago25:36

25:36

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.

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1008. An Update on Poliomyelitis 39:40

2y ago39:40

39:40

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…

1
1007. Immunology of Rare Neuroimmune Disorders Part 2 44:14

2y ago44:14

44:14

Krissy Dilger of SRNA hosted this Ask the Expert podcast on "Immunology of Rare Neuroimmune Disorders Part 2" with experts Dr. Alex Simpson and Dr. Paula Barreras. The experts provided information on how the immune system interacts with the neurological system to cause rare neuroimmune disorders. They described each of these conditions and how diff…

1
303. Long-Term Therapies in NMOSD 32:09

2y ago32:09

32:09

For this “ABCs of NMOSD” podcast titled "Long-Term Therapies in NMOSD," SRNA's Dr. GG deFiebre was joined by Dr. Dean M. Wingerchuk. Dr. Wingerchuk began by explaining the difference between acute versus long-term treatments and providing an overview of the most common long-term treatments for NMOSD. He then discussed side effects and effectiveness…

1
1006. Immunology of Rare Neuroimmune Disorders Part 1 59:33

2y ago59:33

59:33

Dr. GG deFiebre of SRNA was joined by Dr. Philippe-Antoine Bilodeau and Dr. Anastasia Vishnevetsky for the first episode in a four part “Ask the Expert” podcast series on “Immunology of Rare Neuroimmune Disorders.” The experts began by discussing innate and acquired immunity, immune cells, and antibodies. They explained the interrelatedness and int…

1
1005. Community Spotlight - Ben Harris 30:32

2y ago30:32

30:32

The Community Spotlight edition of the “Ask the Expert” podcast series shares the stories of our community members. For this episode, Ben Harris joined Dr. GG deFiebre of SRNA to talk about his experience with transverse myelitis (TM) as a result of neuroinvasive West Nile virus. They discussed his symptoms and diagnosis, rehabilitation, view of th…

1
1004. Community Spotlight - Paul Garrett 45:39

2y ago45:39

45:39

The Community Spotlight edition of the "Ask the Expert" podcast series shares the stories of our community members. For this episode, a Peer Connect volunteer, Paul Garrett, joined Lydia Dubose of SRNA to talk about his experience with transverse myelitis (TM). They discussed his initial symptoms and diagnosis, treatments, rehabilitation, pain mana…

1
302. NMOSD and Pregnancy/Family Planning 46:46

2y ago46:46

46:46

In this episode of ABCs of NMOSD titled “NMOSD and Pregnancy/Family Planning,” Dr. GG deFiebre of SRNA was joined by Dr. Anastasia Vishnevetsky and Dr. Tamara Bockow Kaplan. The experts discussed contraception and other factors that are important for people to plan with their neurologists and obstetricians. They talked about the implications of a r…

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1003. Managing Spasticity with a Baclofen Pump 48:38

2+ y ago48:38

48:38

Dr. GG deFiebre of SRNA was joined by Dr. Miguel Escalón for an Ask the Expert podcast on "Managing Spasticity with a Baclofen Pump." Dr. Escalón began by giving an overview of spasticity, tone, and treatment options. He explained how the baclofen pump works, its advantages, and the impact on neurogenic bladder and bowel function. Next, Dr. Escalón…

1
301. Pediatric NMOSD | Part II, Treatment & Symptom Management 56:35

2+ y ago56:35

56:35

Rebecca Whitney of SRNA was joined by Drs. Jayne Ness and Silvia Tenembaum for an ABCs of NMOSD podcast titled, “Pediatric NMOSD - Part II, Treatment and Symptom Management.” The experts began by explaining symptoms of pediatric NMOSD. They discussed acute and ongoing treatments, considerations (including vaccines), side-effects, and whether or not…

1
1002. The Future of Diagnosing Transverse Myelitis 58:52

2+ y ago58:52

58:52

For this episode of our Ask the Expert podcast series, "The Future of Diagnosing Transverse Myelitis," Dr. GG deFiebre of SRNA was joined by Drs. Kyle Blackburn, Stacey Clardy, Eoin P. Flanagan, Benjamin Greenberg, Michael Levy, and Carlos Pardo-Villamizar. Dr. Carlos Pardo-Villamizar began by explaining the history of transverse myelitis. The expe…

1
1001. Study of Transverse Myelitis in Veterans Health Administration Records 27:58

2+ y ago27:58

27:58

GG deFiebre of SRNA is joined by Drs. Jonathan Galli, Michael Sweeney, and Justin Abbatemarco for an Ask the Expert: Research Edition podcast on the "Study of Transverse Myelitis in Veterans Health Administration Records." The experts begin by explaining the purpose of this research. They also talk about methods they used to conduct this research a…

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913. Avoiding a Misdiagnosis: Understanding the Differences Between MOGAD, MS, and NMOSD 48:35

2+ y ago48:35

48:35

GG deFiebre, PhD of SRNA was joined by Drs. Geoffrey Eubank and Michael Levy for an Ask the Expert podcast on "Avoiding a Misdiagnosis: Understanding the Differences Between MOGAD, MS, and NMOSD." The experts begin by providing an overview of MOG antibody disease, multiple sclerosis, and neuromyelitis optica spectrum disorder, including the similar…

1
210. Insurance and Access to Care in the US 24:35

2+ y ago24:35

24:35

For this ABCs of NMOSD podcast, "Insurance and Access to Care in the US," SRNA's GG deFiebre, PhD was joined by expert Marissa Shackleton, MS. The expert began by explaining the different types of insurance in the United States and providing an overview of common terms used while discussing insurance policies. She then discussed financial assistanc…

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209. COVID-19 and NMOSD Updates 25:57

2+ y ago25:57

25:57

GG deFiebre, PhD was recently joined by Dr. Michael Levy for an ABCs of NMOSD podcast on "COVID-19 and NMOSD Updates." Dr. Levy began with an overview of how people with NMOSD have been affected by COVID-19 in comparison to the general population. He then discussed vaccines and the data that has been collected so far on its efficacy in people with …

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Siegel Rare Neuroimmune Association Srna Podcasts

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