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Ask the Expert

Ask the Expert

By SRNA

The goal of our “Ask the Expert” podcast series is to share the latest research and information on rare neuroimmune disorders and provide an avenue for individuals diagnosed with these disorders and their family members to ask questions to experts who specialize in these disorders. The podcasts are moderated based on questions submitted by our community. We would like to hear from you. If there are topics that you would like us to address in our podcasts, you can share your thoughts by sending an email to info@wearesrna.org and please use SRNA Podcast in the subject.
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1106. CosMOG - Clinical Trial for MOGAD Treatment

Ask the ExpertApr 24, 2023

00:00
20:40
1109. Disability and Rare Neuroimmune Disorders Part 2: Accessibility and Disability Pride

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

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.

Jul 24, 202301:08:06
1108. Disability and Rare Neuroimmune Disorders Part 1

1108. Disability and Rare Neuroimmune Disorders Part 1

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.

Jun 05, 202301:01:43
1107. Update: Study to Investigate the Safety of the Transplantation of Human Glial Restricted Progenitor Cells into Patients with Transverse Myelitis

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

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.

May 31, 202317:38
1106. CosMOG - Clinical Trial for MOGAD Treatment

1106. CosMOG - Clinical Trial for MOGAD Treatment

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.

Apr 24, 202320:40
1105. What to Expect Living with NMOSD and MOGAD Long-Term

1105. What to Expect Living with NMOSD and MOGAD Long-Term

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.

Apr 19, 202324:37
1104. Community Spotlight - Paul Turner

1104. Community Spotlight - Paul Turner

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.

Apr 05, 202336:17
1103. Community Spotlight - Melanie Flood

1103. Community Spotlight - Melanie Flood

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.

Mar 14, 202356:16
1102. COVID-19 and the Risk of CNS Demyelinating Diseases
Feb 20, 202308:19
1101. What do we know about holistic therapies to manage symptoms of rare neuroimmune disorders?

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

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.

Jan 30, 202342:48
1011. Health Disparities and Rare Neuroimmune Disorders

1011. Health Disparities and Rare Neuroimmune Disorders

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.

Sep 15, 202217:47
1010. Immunology of Rare Neuroimmune Disorders Part 3

1010. Immunology of Rare Neuroimmune Disorders Part 3

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 astrocytic scars. He also summarized how an MRI may not correlate with how much function returns. Finally, Dr. Greenberg provided information on ongoing research on repair and stem cells, as well as the risks of stem cell clinics.

Aug 29, 202217:58
1009. Air Travel with a Disability: Blind and Guide Dog Travel
Aug 26, 202222:52
Bonus Track | COVID-19 Vaccines Part VII with Dr. Greenberg

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

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.

Aug 22, 202225:37
1008. An Update on Poliomyelitis

1008. An Update on Poliomyelitis

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, and how poliomyelitis differs from acute flaccid myelitis (AFM) and transverse myelitis (TM). Finally, the experts gave general recommendations about these vaccines for people who have neuroimmune disorders or who are on immunosuppression.

Aug 11, 202239:40
1007. Immunology of Rare Neuroimmune Disorders Part 2

1007. Immunology of Rare Neuroimmune Disorders Part 2

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 different treatments impact the immune system. Finally, the experts talked about long-term issues related to immune-mediated diseases, including relapses, vaccinations, pregnancy and family planning, and genetic components.

Jul 18, 202244:15
1006. Immunology of Rare Neuroimmune Disorders Part 1

1006. Immunology of Rare Neuroimmune Disorders Part 1

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 interactions between different aspects of the immune system and the nervous system. They also gave a detailed overview of how several medications affect the immune system as treatments and therapies for rare neuroimmune disorders. Finally, the experts discussed how the brain and immune system may or may not change after an injury and the direction of neuroimmunology research.

Jun 16, 202259:34
1005. Community Spotlight - Ben Harris

1005. Community Spotlight - Ben Harris

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 the healthcare system, and philosophy for day-to-day life.

Jun 06, 202230:32
1004. Community Spotlight - Paul Garrett

1004. Community Spotlight - Paul Garrett

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 management, and life today.

May 21, 202245:40
1003. Managing Spasticity with a Baclofen Pump

1003. Managing Spasticity with a Baclofen Pump

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 described the initial surgical procedure, recovery process, and potential risks. Finally, he discussed long-term operation and maintenance, as well as safety measures and how pregnancy might impact the baclofen pump. You can view this video and transcript on our web site: https://wearesrna.org/resources/managing-spasticity-with-a-baclofen-pump/

Mar 21, 202248:38
1002. The Future of Diagnosing Transverse Myelitis

1002. The Future of Diagnosing Transverse Myelitis

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 experts then talked about criteria for TM published in 2002 and how the diagnostic process has changed in the past 20 years. They discussed the terminology of TM, how vascular causes of myelopathies change our understanding of diagnosing TM, and changes they foresee to the TM diagnostic criteria and process. Finally, they answered questions from the audience about potential research for treatments or a cure and COVID-19 vaccines.

Feb 21, 202258:52
1001. Study of Transverse Myelitis in Veterans Health Administration Records

1001. Study of Transverse Myelitis in Veterans Health Administration Records

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 and the inclusion and exclusion criteria. The major findings are described, as well as how these compare to previous studies. Finally, the experts discuss what this means for those with TM, the future of diagnosing and treating TM, and ways in which physicians and medical experts can be educated in regard to these issues.

Feb 14, 202227:58
913. Avoiding a Misdiagnosis: Understanding the Differences Between MOGAD, MS, and NMOSD

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

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 similarities and differences between the disorders. They explain how each of the diagnoses are made, the potential consequences of misdiagnosis, and why a diagnosis might change over time. Finally, the experts discuss current research being conducted and what may be expected in the future for diagnosing these disorders.

Jan 12, 202248:36
912. MOG Antibody Disease: Diagnosis and Treatment Guidelines

912. MOG Antibody Disease: Diagnosis and Treatment Guidelines

SRNA's Krissy Dilger was joined by Drs. Eoin Flanagan and Rohini Samudralwar for an Ask the Expert podcast on "MOG Antibody Disease: Diagnosis and Treatment Guidelines." The experts gave an overview of the diagnostic tests used for MOGAD and how it is differentiated from other demyelinating conditions. They explain the acute treatments used following an attack, as well as guidelines for ongoing preventative therapies. Finally, the experts discuss research into MOGAD and future considerations for treatment.

Dec 07, 202155:39
911. Temperature Sensitivity and Rare Neuroimmune Disorders

911. Temperature Sensitivity and Rare Neuroimmune Disorders

Krissy Dilger of SRNA was joined by Dr. Gretchen Hawley for an Ask the Expert podcast on "Temperature Sensitivity and Rare Neuroimmune Disorders." Dr. Gretchen began by explaining why people with rare neuroimmune disorders may experience heat and cold sensitivity. She discussed how temperature regulation plays a role and the effects it can cause on someone with a rare neuroimmune disorder. Finally, Dr. Gretchen provided various treatment options and coping mechanisms for temperature sensitivity.

Nov 03, 202127:03
910. Acute Disseminated Encephalomyelitis: Diagnosis and Treatment Guidelines

910. Acute Disseminated Encephalomyelitis: Diagnosis and Treatment Guidelines

Krissy Dilger of SRNA was joined by Dr. Farrah Mateen and Dr. Cindy Wang for an Ask the Expert Podcast on "Acute Disseminated Encephalomyelitis (ADEM): Diagnosis and Treatment Guidelines." The experts begin by providing an overview of ADEM, including a brief definition, signs and symptoms in the acute phase, and potential causes. The physicians then discuss diagnostic tests and how other disorders are ruled out. They talk about acute treatments and long-term care for people with ADEM. Finally, the experts provide information on research being conducted on ADEM.

Oct 21, 202151:16
Bonus Track | COVID-19 Vaccines Part VI with Dr. Greenberg

Bonus Track | COVID-19 Vaccines Part VI with Dr. Greenberg

In this Part VI 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.

Aug 19, 202125:54
Bonus Track | COVID-19 Vaccines Part V with Dr. Greenberg

Bonus Track | COVID-19 Vaccines Part V with Dr. Greenberg

In this Part V 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.

Aug 16, 202117:26
Bonus Track | COVID-19 Vaccines Part IV with Dr. Greenberg

Bonus Track | COVID-19 Vaccines Part IV with Dr. Greenberg

In this Part IV 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.

Aug 16, 202132:45
Bonus Track | COVID-19 Vaccines Part III with Dr. Greenberg

Bonus Track | COVID-19 Vaccines Part III with Dr. Greenberg

In this Part III 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.

Aug 16, 202132:01
Bonus Track | COVID-19 Vaccines Part II with Dr. Greenberg

Bonus Track | COVID-19 Vaccines Part II with Dr. Greenberg

In this Part II 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.

Aug 16, 202119:16
Bonus Track | COVID-19 Vaccines Part I with Dr. Greenberg

Bonus Track | COVID-19 Vaccines Part I with Dr. Greenberg

In this first part 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.

Aug 16, 202123:27
909. Transverse Myelitis: Symptom Management

909. Transverse Myelitis: Symptom Management

Krissy Dilger of SRNA was joined by Dr. Ram Narayan and Dr. Elena Grebenciucova for an Ask the Expert podcast entitled, "Transverse Myelitis: Symptom Management." The experts discuss medications and other treatment options for symptoms such as pain, spasticity, fatigue, and more. They talk about the different healthcare providers who form a team to help a person with TM receive comprehensive care. Finally, the experts discuss vaccinations and whether the COVID-19 vaccine is recommended for people with TM.

Aug 10, 202155:07
908. Talking With Your Child About a Difficult Diagnosis

908. Talking With Your Child About a Difficult Diagnosis

SRNA hosted an Ask the Expert podcast, a special edition in collaboration with CDC, entitled "Talking With Your Child About a Difficult Diagnosis." We were joined by pediatric neuropsychologist Dr. Lana Harder. Dr. Harder discussed strategies for talking to your child about the diagnostic tests that are used at the onset of a rare neuroimmune disorder and how they may be invasive or painful. She explained transition of care as a child grows older and closer to adulthood and how to ensure your child is able to ask questions pertaining to their medical care. Dr. Harder talked about discussing concepts such as disability and adaptive activities with your child and what the future might hold for someone with one of these disorders. Finally, Dr. Harder discussed the emotions children might experience as part of this diagnosis and navigating your own emotions as a parent while talking with your child about their disorder.

Jul 26, 202153:52
907. Transverse Myelitis: Diagnosis and Treatment Guidelines

907. Transverse Myelitis: Diagnosis and Treatment Guidelines

SRNA hosted an Ask the Expert podcast entitled, "Transverse Myelitis: Diagnosis and Treatment Guidelines" with medical experts Dr. Ram Narayan and Dr. Elena Grebenciucova. The experts began by explaining what transverse myelitis is, signs and symptoms, and how the diagnosis is made. They discussed acute treatments and how they decide which treatments to use for each patient. Finally, the experts talked about rehabilitation and what someone should do if they experience decompensation.

Jun 22, 202155:56
906. The Role of CDC and Public Health in AFM Surveillance | Part II

906. The Role of CDC and Public Health in AFM Surveillance | Part II

SRNA hosted an Ask the Expert podcast, in collaboration with Centers for Disease Control and Prevention, on "CDC and the Role of Public Health in Acute Flaccid Myelitis (AFM), Part 2." We were joined by Dr. Janell Routh of CDC, Dr. Ben Greenberg of UT Southwestern Medical Center, and Emily Spence Davizon of the Colorado Department of Public Health and Environment. The experts discuss whether an outbreak of AFM cases is expected in 2021, along with the potential causes of AFM, and how an outbreak is defined. They talk about what they are doing to prepare for possible new cases of AFM and why preventing new cases is difficult. The experts explain the importance of surveillance and research in improving outcomes for future children that are diagnosed with AFM, including the importance of ICD 10 codes. Finally, the experts discuss the distinction between the surveillance definition and the diagnostic criteria for AFM and how these criteria evolve over time.

May 31, 202157:46
905. The Role of CDC and Public Health Agencies in AFM Surveillance | Part I

905. The Role of CDC and Public Health Agencies in AFM Surveillance | Part I

SRNA hosted an Ask the Expert podcast, in collaboration with Centers for Disease Control and Prevention, on "CDC and the Role of Public Health in Acute Flaccid Myelitis (AFM)." We were joined by Dr. Janell Routh of CDC, Dr. Ben Greenberg of UT Southwestern Medical Center, and Emily Spence Davizon of the Colorado Department of Public Health and Environment. The experts discuss the process of how AFM cases are diagnosed, reported to public health agencies, sent to CDC, and classified. They describe the role of each organization/agency in reporting a case and the stages each case goes through. The experts define important terms such as surveillance, nationally notifiable, and mandatory reporting. Finally, the experts reiterate the importance of reporting cases for public health purposes, the need for clinicians to be aware of reporting, and the ways in which the case definition of AFM has evolved since 2014.

May 20, 202146:32
904. Behavioral and Psychological Changes in Demyelinating Conditions | Part 2

904. Behavioral and Psychological Changes in Demyelinating Conditions | Part 2

SRNA hosted this Ask the Expert Podcast on "Behavioral and Psychological Changes in Demyelinating Conditions, Part 2" with experts Dr. Cindy Wang, Dr. Alison Wilkinson-Smith, and Densie Maddox, RN, BSN, MSCN. The experts provide information on what kinds of psychological and behavioral changes may occur in people with rare neuroimmune disorders and other demyelinating conditions. They explain how psychology and psychiatry play a role in developing treatment plans and which treatments are most effective. Helping children with these disorders succeed in school environments is discussed. Finally, the experts talk about ways in which adults and children with these disorders can advocate for their care.

Apr 21, 202155:01
903. My child has just been diagnosed with AFM. What do I need to know?

903. My child has just been diagnosed with AFM. What do I need to know?

Dr. Sarah Hopkins and Sarah Stoney, MSW, LSW joined SRNA’s Rebecca Whitney for this Ask the Expert podcast, in collaboration with Centers for Disease Control (CDC). The topic is, “My child was just diagnosed with AFM. What do I need to know?” Dr. Hopkins begins by explaining the acute treatments typically administered after an AFM diagnosis and what families should expect during this time. She and Sarah Stoney discuss the importance of the care team in supporting the family during both the acute phase and long-term. Sarah Stoney describes the role of a social worker in helping with applying for insurance coverage, creating 504 plans for school, and many other supportive actions. Finally, the experts stress the role of child life specialists in helping a child and their siblings understand their diagnosis and participate in their care.

Mar 16, 202158:02
902. Study on Pediatric Teleneuropsychology

902. Study on Pediatric Teleneuropsychology

For this episode of our Ask the Expert Podcast Series: Research Edition, Rebecca Whitney is joined by Dr. Lana Harder to discuss her "Study on Pediatric Teleneuropsychology." Dr. Harder begins by explaining what neuropsychology is and what a neuropsychology assessment involves. She then talks about the purpose of the study and how telehealth differs from in-person appointments. She relays the findings from the study and the reasons why studying telehealth is important. Finally, Dr. Harder discusses implications for future research.

Mar 02, 202120:41
901. Dr. Michael Levy’s Research at The NMO Clinic and Research Laboratory at Mass General

901. Dr. Michael Levy’s Research at The NMO Clinic and Research Laboratory at Mass General

Dr. Michael Levy joined SRNA for an episode of our Ask the Expert Podcast Series: Research Edition, entitled “Dr. Michael Levy’s Research at The NMO Clinic and Research Laboratory at Mass General.” During the podcast, Dr. Levy discusses a project his lab is coordinating to track the experiences of people with rare neuroimmune disorders who have gotten a COVID-19 vaccine. He then talks about research he is conducting on genetics and transverse myelitis. Dr. Levy explains the animal models that are being developed to study aquaporin-4 in neuromyelitis optica spectrum disorder and T-cells in MOG antibody disease. Finally, Dr. Levy discusses upcoming clinical trials that will take place soon for people with MOG antibody disease and a future study on how diet affects people with rare neuroimmune disorders.

Feb 19, 202118:22
809. Managing Visual Issues

809. Managing Visual Issues

SRNA is joined by Amanda Aaron, OTD and Deb Nikkila, MOT, OTR/L for an Ask the Expert podcast on "How to Manage Visual Issues." The experts describe the purpose of low vision rehabilitation and the resources available for people experiencing visual issues. They respond to questions regarding symptoms such as eye pain, darkened vision, color issues, and more. Deb and Amanda discuss assistive technology for people who are vision impaired, and they talk about driving and transportation. Finally, the experts relay the nuances of adapting one's employment following vision impairment.

Dec 14, 202052:12
808. MOG Antibody Disease: Adult and Pediatric Presentations

808. MOG Antibody Disease: Adult and Pediatric Presentations

SRNA partnered with The MOG Project to host this Ask the Expert podcast on "MOG Antibody Disease: Adult and Pediatric Presentations" with Dr. Leslie Benson and Dr. Michael Levy. The experts begin by defining MOG antibody disease and describing the different presentations for adult and pediatric individuals. They discuss the long-term effects and management of the disease. Finally, Dr. Benson and Dr. Levy provide the acute and preventative treatments for MOGAD.

Oct 19, 202054:06
807. Behavioral and Psychological Changes in Demyelinating Conditions

807. Behavioral and Psychological Changes in Demyelinating Conditions

SRNA is joined by Dr. Cynthia Wang and Dr. Lana Harder for an Ask the Expert podcast on "Behavioral and Psychological Changes in Demyelinating Conditions." The experts begin by discussing various psychological effects that people diagnosed with rare neuroimmune disorders may experience, including PTSD, anxiety, stress, and depression. They also talk about behavioral changes that may occur, such as mood swings, changes in personality, and fatigue. Psychological and behavioral challenges of pediatric patients are discussed, as well as possible treatment and coping strategies. Finally, the experts discuss ways in which physicians and medical experts can be educated in regard to these issues for their patients who are diagnosed with rare neuroimmune disorders.

Aug 13, 202053:01
806. Latest Updates on COVID-19 and Rare Neuroimmune Disorders

806. Latest Updates on COVID-19 and Rare Neuroimmune Disorders

SRNA is joined by Dr. Benjamin Greenberg and Dr. Michael Levy for an Ask the Expert podcast: "Latest Updates on COVID-19 and Rare Neuroimmune Disorders." The experts begin by discussing risk factors for individuals diagnosed with rare neuroimmune disorders contracting COVID-19 and having severe cases of COVID-19 if infected. Treatment and potential vaccination options are discussed, as well as the possible effect of immunosuppressant medication on individuals diagnosed with COVID-19. The experts explain cytokine storms, inflammatory issues such as Kawasaki's, and the possibility of neurological deficits after contracting COVID-19. Finally, the experts discuss the impact of COVID-19 on research, including research into the effects of COVID-19 on individuals with rare neuroimmune disorders as well as unrelated ongoing research studies.

May 13, 202058:25
805. Helping Children and Families Manage and Cope with Stress During COVID-19

805. Helping Children and Families Manage and Cope with Stress During COVID-19

SRNA is joined by Ana M. Hernandez, MS, CBIS and Lana Harder, PhD, ABPP for an Ask the Expert podcast on "Helping Children and Families Manage and Cope with Stress During COVID-19." The podcast begins with the experts giving stress management techniques for adults and children experiencing stress due to the COVID-19 pandemic. The experts discuss homeschooling and parenting, how to manage family dynamics, and ways to practice self-care.

Apr 09, 202001:05:08
804. Neuroimmune System 101 / A primer on how the nervous and immune systems work together

804. Neuroimmune System 101 / A primer on how the nervous and immune systems work together

SRNA is joined by Dr. Kyle Blackburn and Dr. Cynthia Wang for a podcast on "Neuroimmune System 101: A primer on how the nervous and immune systems work together." The podcast begins with an overview of the nervous and immune systems and how they relate in the context of rare neuroimmune disorders. The experts discuss COVID-19 (coronavirus) in relation to the immune systems of people with rare neuroimmune disorders. They then answer questions on different ways in which the immune system is activated and how different triggers for the immune system may affect someone with an existing rare neuroimmune disorder. Finally, the experts, who are both former James T. Lubin Fellows, share their research and describe how to participate.

Mar 19, 202048:38
803. What is neurosarcoidosis?

803. What is neurosarcoidosis?

SRNA is joined by Dr. Michael Bradshaw and Dr. Rohini Samudralwar for a podcast on "What is neurosarcoidosis?" The experts discuss the symptoms, diagnostic criteria, and potential causes of neurosarcoidosis. They talk about the relationship between neurosarcoidosis and the other rare neuroimmune disorders, as well as predispositions for the disorder. Acute treatments, long-term symptoms, and prognosis are discussed. Finally, the experts respond to several questions from the SRNA community.

Feb 19, 202059:33
802. Newly Diagnosed with a Rare Neuroimmune Disorder: What You Need to Know

802. Newly Diagnosed with a Rare Neuroimmune Disorder: What You Need to Know

Dr. Olwen Murphy and Dr. Ram Narayan join SRNA for a podcast on "Newly Diagnosed with a Rare Neuroimmune Disorder: What You Need to Know." The experts begin by discussing early symptoms of a rare neuroimmune disorder and what kind of medical care a person should seek if they are experiencing these symptoms. The experts then describe the process of diagnosing these disorders and what tests should be conducted. Acute treatments, rehabilitation, and next steps are discussed. The experts discuss prognosis and what should be done if a person feels they are experiencing a relapse.

Feb 11, 202001:00:55
801. Everything You Need to Know About Spasticity and How It's Treated

801. Everything You Need to Know About Spasticity and How It's Treated

SRNA is joined by Dr. Philippines Cabahug and Dr. Jacqueline A. Nicholas for a podcast on "Everything You Need to Know About Spasticity and How It's Treated.” The experts define spasticity and tone, and they discuss the causes of spasticity. Treatment options are discussed, as well as differences between individual treatment goals. The experts describe the benefit of spasticity and the timeline for when spasticity may appear after diagnosis.

Jan 30, 202001:01:10
718. Optic Neuritis — When is it just ON and when does it mean more?

718. Optic Neuritis — When is it just ON and when does it mean more?

SRNA is joined by Dr. Amanda Henderson and Dr. Elias Sotirchos for a podcast on "Optic Neuritis: When is just ON and when does it mean more?" The medical experts begin by explaining what optic neuritis is, the symptoms, and how it is diagnosed. Treatments, both acute and ongoing, are discussed, as well as circumstances surrounding relapses. The medical experts then discuss ON in the context of other diagnoses such as neuromyelitis optica spectrum disorder, MOG antibody-associated disease, and multiple sclerosis. Finally, rehabilitation and current research on ON is discussed.

Dec 12, 201954:03