SRNA Soundwaves

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.

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 assistance programs and how to navigate medical costs when a person is under-insured or uninsured. Finally, the expert provided information on the process of appealing insurance denials, as well as programs to help afford medication costs.

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 NMOSD. Finally, Dr. Levy gave an update on the ongoing research that is being conducted on COVID-19 and people with NMOSD.

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.

Dr. Hesham Abboud joined Dr. Chelsey Judge of The Connor B. Judge Foundation for an ABCs of NMOSD podcast titled, "Navigating Treatment Options." Dr. Abboud began with an overview of treatments for NMOSD patients experiencing an acute relapse and the timing for introducing these treatments, as well as potential side effects. He talked about factors to consider during the Covid-19 pandemic and strategies for navigating costs and medical insurance. Dr. Abboud outlined each FDA-approved and off-label treatment for relapse prevention and maintenance, possible risks and side effects, potential differences in insurance coverage, and a clinical pharmacist’s role in the selection process. Finally, Dr. Abboud described considerations for a woman who's considering family planning and how to set up co-treatment with an academic or neuroimmunology center.

Rebecca Whitney of SRNA was joined by Dr. Jayne Ness and Dr. Silvia Tenembaum for an ABCs of NMOSD podcast titled, "Pediatric NMOSD - History and Diagnosis, Part 1." The experts begin by explaining the history of pediatric NMOSD, including the first known cases and a research paper that was published on the subject. They then discuss how common NMOSD is in pediatric patients and the diagnostic tests used for NMOSD. The experts compare NMOSD and MOGAD in children, including antibody levels, disease course, and treatment protocol. Finally, the experts provide information on differential diagnoses and prognosis.

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.