Ask the Expert

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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/

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

SRNA is joined by medical experts Dr. Carlos Pardo and Dr. Bardia Nourbakhsh for a podcast on Fatigue and Rare Neuroimmune Disorders. The experts begin by describing the different causes and types of fatigue. They then discuss treatment options for people experiencing fatigue, both medicated and natural. How to manage the everyday effects of fatigue - whether it's at work, school, home, etc. - is discussed, and the experts give their perspectives on how to talk to one's healthcare providers about fatigue. Finally, the experts discuss the role research plays in studying fatigue and developing new therapies.

The TMA is joined by Dr. Jonathan Cheng from Children’s Medical Center and UT Southwestern Medical Center and Dr. Mitch Seruya Children’s Hospital Los Angeles. The surgeons discuss nerve transfers and how they are used for individuals with AFM. They talk about risks of surgery as well as the post-surgery recovery process. Dr. Cheng and Dr. Seruya also discuss the role of insurance in covering nerve transfer surgery, and they talk about upcoming research publications.

The TMA is pleased to be joined by surgeons Dr. Amy Moore from Washington University School of Medicine and Dr. Dan Zlotolow from The Shriners Hospital for Children Philadelphia and Greenville, The Philadelphia Hand to Shoulder Center, and The Hospital for Special Surgery in New York. The doctors discuss the purpose of nerve transfers in patients with acute flaccid myelitis (AFM) and what the surgery entails. They discuss what qualifications they look for in a candidate for nerve transfer. Dr. Moore discusses nerve decompression and how she determines if a patient could benefit from this type of surgery. Dr. Zlotolow discusses phrenic nerve damage and restoring respiratory function in individuals with AFM.

The TMA is joined by Dr. Eoin Flanagan, Associate Professor of Neurology and Consultant in the departments of Neurology and Laboratory Medicine and Pathology at the Mayo Clinic (Rochester, MN). Dr. Flanagan defines different imaging techniques and discusses how imaging is used to diagnose rare neuroimmune disorders. He discusses what imaging results can tell us about prognosis and the likelihood of developing multiple sclerosis. He provides guidelines for how often to get new MRIs after an inflammatory event, and what new imaging can tell you about your condition. Finally, research and the future of imaging techniques is discussed.

The TMA is joined by Dr. Nicholas L. Zalewski from Mayo Clinic and Dr. Olwen Murphy from Johns Hopkins University to help our listeners better understand spinal cord strokes and other vascular myelopathies. Definitions of spinal cord stroke and vascular myelopathy were given. The experts explained the similarities and differences of spinal cord stroke and transverse myelitis. Signs and symptoms of spinal cord stroke were discussed, as well as diagnostic criteria and treatment. The experts also discussed long-term symptom management and prognosis of individuals diagnosed with spinal cord stroke, as well as the importance of rehabilitation.

The TMA is joined by Dr. Janell Routh and Dr. Manisha Patel from the Centers for Disease Control and Prevention, as well as Dr. Benjamin Greenberg from University of Texas Southwestern Medical Center, to discuss the role of CDC in Acute Flaccid Myelitis (AFM) surveillance. The history of the CDC’s response to AFM is discussed. The medical experts explain the difference between polio and AFM. The experts also give a detailed explanation for the current state of reporting of AFM to CDC. A new consult portal was recently developed by the TMA in collaboration with CDC and physicians at UTSW and Johns Hopkins, and more information is given on this new tool. The CDC officials also discuss plans for follow-up of AFM patients. The experts give an overview of the current research being conducted on AFM and how it will inform future treatment. 

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Parent's Perspective on AFM

Managing Adult Urological Issues

Relapsing vs Monophasic Rare Neuroimmune Disorders

Pediatric MOG Antibody Associated Disease and ADEM

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Alternative therapies for the treatment of rare neuroimmune disorders

Stem Cells as a Treatment for Rare Neuroimmune Disorders

Managing your health after a rare neuroimmune diagnosis

Vaccinations and rare neuroimmune disorders

The Role of Pharmaceutical Companies in Drug Development for Rare Neuroimmune Diseases

The podcast on “Understanding Autoimmunity and Rare Neuroimmune Disorders” as part of TMA's Ask the Expert podcast series was held on March 25, 2014 a 2 pm EST. The physician-experts on the panel were Dr. Benjamin Greenberg from UTSW and Dr. Carlos Pardo from Johns Hopkins Medicine. Over 50 people dialed-in to listen to the Live Podcast, which was moderated by TMA Executive Director, Chitra Krishnan. Thank you for submitting your questions in advance as well as sharing your questions on the TMA Facebook page. During the 55 minutes of the podcast, we were able to address most of the questions and the focus of the questions was determined by those that received the most votes by our community. We are planning on future podcasts on topics of Fatigue and Cognition, Pain Management, Spasticity Management, and more to address your questions and concerns.

The podcast on “Children with rare neuroimmune disorders: understanding medical, educational and social considerations” as part of TMA's Ask the Expert podcast series was held on December 16, 2013 a 2 pm EST. The physician-experts on the panel were Dr. Benjamin Greenberg from UTSW and Dr. Lana Harder from y. Over 20 people dialed-in to listen to the Live Podcast, which was moderated by TMA Executive Director, Chitra Krishnan. Thank you for submitting your questions in advance as well as sharing your questions on the TMA Facebook page. During the 55 minutes of the podcast, we were able to address most of the questions and the focus of the questions was determined by those that received the most votes by our community. We are planning on future podcasts on topics of Fatigue and Cognition, Pain Management, Spasticity Management, and more to address your questions and concerns.