Ask the Expert

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 [00:01:49]. Minaal discussed her motivation to volunteer stemming from her brother’s diagnosis of NMOSD [00:02:42]. Minaal and Doug delved into their volunteer activities, including organizing events and contributing to educational resources, highlighting the impact of volunteering on both personal growth and community support [00:07:13]. Minaal Zahid is an incoming neurodevelopmental disabilities resident physician whose journey in medicine was shaped by her family's history of autism and NMOSD. She witnessed firsthand the challenges her family faced in obtaining a diagnosis for her younger brother, who struggled with NMOSD symptoms for nearly a year before diagnosis, resulting in the unfortunate loss of vision in his left eye. Assuming the role of caretaker as the eldest daughter, Minaal was inspired to pursue a career in neurology to assist families facing similar struggles with neurological disorders. This pursuit led her to SRNA where she is excited to educate the general public and her colleagues about rare neuroimmune disorders and help enact policy changes to better serve patients with neurological disabilities. Doug Kirby has lived most of his life in Utah. After earning a degree in microbiology from BYU, he went to the University of Washington to gain his master's degree in environmental health science. Doug also spent two years in South Korea as a church missionary. He has been married to his wife Holly for 39 years, and they have 5 kids, all boys but the first four, and eight grandchildren. Doug spent the first ten years of his career in the environmental field working at two different hazardous waste disposal sites and then switched to information technology. During his career, Doug has been a developer and manager. He currently lives in Herriman, Utah where he and Holly are looking forward to retirement in a little over three years. Doug was diagnosed with NMOSD when he was 56 in 2017. His vision is fine, but he has some physical difficulties including numbness and trouble walking that he has learned to live with. Doug enjoys meeting with and learning from others who are going through similar challenges.

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 neuroimmune disorders and the support they found through SRNA's programs [00:13:41]. They also shared what they hope to see in the future related to rare neuroimmune disorders and SRNA [00:22:53] and offered advice for anyone who might be interested in getting involved [00:30:51]. Alexandra Goulimi was born in 1969 and lived in Germany until she moved to Greece in 2011. She has a background in Human Resources Development and holds a master’s degree in Sociology and a PhD in Communications. In 2009 Alexandra met the Human Design System and has been experimenting since then with making decisions guided by her body’s intelligence. In 2017 Alexandra was diagnosed with NMOSD. It was challenging to meet the initial shock and deal with the symptoms. She has navigated her NMO-journey guided in her decisions by her intuitive response. Alexandra’s experience of NMO has led her to a profound understanding and a deeper love of herself and life. Angela Jackson has been a member of a book club for 20 years. She is also a published author. Angela was a VP of Account Management working for a software company responsible for Customer Success. On February 27, 2019, she woke up with a numb left thigh. 12 hours later she was paralyzed from the waist down, diagnosed with idiopathic transverse myelitis, and hospitalized. Her lifestyle changed: acceptance of the diagnosis, therapy, limitations, working from home, depending on others... Moving forward with a positive outlook on life, Angela joined SRNA, serving as a Peer Connect Leader and hosting the first Houston, Texas Walk-Run-N-Roll. Angela has an awesome family. She is thankful for loving and supportive family and friends.

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 diagnosis [00:01:22]. Despite experiencing skepticism and frustration, she persisted in seeking medical care and advocating for herself [00:02:38]. Eventually, after enduring significant health challenges, she was correctly diagnosed [00:12:07]. Despite ongoing symptoms and lifestyle adjustments, Ilona highlighted the importance of education, advocacy, and supportive communities in managing NMOSD [00:18:55] and mental health [00:37:56]. Ilona grew up as a military brat, spending most of her youth in Germany. She attended high school and community college in Maryland and has worked in Intellectual Property (IP) as a secretary and coordinator in two large international law firms over the last 25 yrs. Originally, she was diagnosed with transverse myelitis (TM) in 2006. Then, after additional issues and relapses, she was diagnosed with and treated for relapsing and remitting multiple sclerosis (MS). Finally, in 2018, Ilona was diagnosed with NMOSD AQP4+. In 2018 and 2019, she also battled breast cancer and was treated with radiation, chemotherapy, double mastectomy surgery, and complete hysterectomy. After five months of being transferred in and out of different hospitals and two years of very intensive speech therapy and physical therapy, she lives independently and on her own. Her mother is a great advocate and caretaker. She keeps Ilona motivated, strong, with her spirits up, and looking forward to every day. She’s helped to motivate Ilona to become her own best advocate.

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 the study and how this research focused on determining the impact of elevated intracranial pressure on patient outcomes (00:03:52-00:06:56). She reviewed the implications of the findings for patient management, emphasizing the importance of early recognition and intervention to mitigate disability (00:10:34-00:14:02). Dr. Wang and Dr. Nguyen anticipated future studies and stressed the collaborative effort required for better patient outcomes and the need for ongoing research in this field (00:17:16-00:20:30). Dr. Linda Nguyen completed her MD, PhD training at West Virgina University in 2017, and then pediatric neurology residency at University of California San Diego in 2022. Currently, she is a neuroimmunology fellow at University of Texas Southwestern. Dr. Cynthia Wang received her medical degree from University of Texas Southwestern Medical Center in Dallas, Texas and completed a pediatrics and pediatric neurology residency at Mott Children’s Hospital, University of Michigan Health System in Ann Arbor, Michigan. Dr. Wang completed her James T. Lubin Fellowship under the mentorship of Dr. Benjamin Greenberg at The University of Texas Southwestern and Children’s Health. Her research study was a prospective, longitudinal study on acute disseminated encephalomyelitis (ADEM) to identify the clinical characteristics, treatment methods, and follow-up interventions that are associated with better and worse patient-centered outcomes.

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 disease began in 2007, after the onset of neuromyelitis optica spectrum disorder (NMOSD) in her 5-year-old son, Collin. She learned what it took to be a “Rare Mom” and fought for her son’s life. After Collin’s passing in 2012, Lisa switched gears and went to work for the Guthy-Jackson Charitable Foundation (GJCF), where she is now the Director of Patient Advocacy. She now uses her extensive caregiver experience to help other patients and families living with NMOSD. Through GJCF, Lisa is able to engage with the NMOSD community to provide resources, information, and education, as well as lead support groups and raise awareness of rare diseases through educational events.

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 Lopardi. Chris lost his son, Mason at age seven to ADEM in May of 2020. Chris, his wife Amanda, and their family have made it their passion to help spread the word of what ADEM is and to help those affected by it. Through their organization, The Miles for Mason Memorial Foundation, they hope to help those affected by ADEM.

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 the potential causes of neurosarcoidosis, highlighting immune system dysregulation and the formation of granulomas. Treatment options, including steroids and immune suppressants, were discussed, and the chronic nature of the disease was explored, with considerations for relapses and long-term effects. The conversation concluded with insights into patient advocacy, the importance of early diagnosis, and ongoing research efforts in the field. Giovanna S. Manzano, MD is a neuroimmunologist/MS specialist and neurohospitalist at the Massachusetts General Hospital and the Brigham and Women's Hospital in Boston, Massachusetts. She provides care to patients with neuroimmunologic diseases inclusive of CNS demyelinating disorders, autoimmune/paraneoplastic encephalitis and cerebellar degeneration, neurosarcoidosis, and neurotoxicities from oncologic therapies. Her research is focused on optimizing care delivery and approach to treatment of neuroimmunologic conditions by way of studies that emphasize patient reported outcomes, quality improvement, and clinical trial design.

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, and the decision process for escalation. Finally, the experts shared age considerations and upcoming research. John Chen, MD, PhD attended the University of Virginia for his undergraduate and combined MD/PhD degrees. He completed his Ophthalmology residency and Neuro-Ophthalmology fellowship training at the University of Iowa. He then took a position at the Mayo Clinic in 2014 where he specializes in Neuro-Ophthalmology. Currently, he serves as a Consultant and Professor of Ophthalmology and Neurology, and Neuro-Ophthalmology Fellowship Director at the Mayo Clinic. Among Dr. Chen’s awards/honors are the AAO Achievement Award, resident and fellow teaching awards at the University of Iowa, Ophthalmology Teacher of the Year Award three times at the Mayo Clinic, 2023 Mayo Clinic Distinguished Educator Award, Top Doctors in Minnesota, and the Heed Fellowship. He is a board member for the North American Neuro-Ophthalmology Society and is on multiple committees for the AAO, co-chairs the Upper Midwest Neuro-Ophthalmology Group, is a member of the American Ophthalmological Society and American Eye Study Club, previously served as the President for the Minnesota Academy of Ophthalmology and participated in the AAO and AUPO Leadership Development Programs. He has over 200 peer-reviewed publications, has received several research awards, and is currently RO1 funded through the NIH. He has given over 200 oral presentations, including multiple named lectureships, and visiting professorships, on his interests in ophthalmic imaging, idiopathic intracranial hypertension, and optic neuritis, especially NMOSD and MOG antibody-associated disease. Elias Sotirchos, MD is a neurologist at Johns Hopkins Hospital in Baltimore, Maryland. He specializes in the diagnosis, management, and treatment of neuroimmunological disorders that involve the central nervous system, including multiple sclerosis (MS), neuromyelitis optica spectrum disorder (NMOSD), and myelin oligodendrocyte glycoprotein-immunoglobulin G (MOG-IgG)-associated disorder (MOGAD). His research focuses on developing and validating novel imaging and blood-based biomarkers of these conditions, and clinical trials of experimental therapeutic agents.

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 the gap for those who are negatively affected by health disparities.

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 project, which is investigating whether novel neuronal biomarkers within exosomes are found in the blood of patients with transverse myelitis. Dr. Anderson discussed the possible impact of this research on the areas of genetics and diagnostic criteria.

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. Finally, Kathy described the goals and logistics of the TAKE CHARGE® program and the Coaching Series.

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.

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.

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.

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.

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 literature published in English on different platforms around the world where the diagnosis was confirmed usually with aquaporin-4 or MOG antibody testing, including children and adults. They examined whether Covid infections cause inflammatory central nervous system (CNS) demyelinating diseases, including multiple sclerosis, NMOSD, MOG antibody disease, or relapses, and at what rate. You can view the paper here: https://www.frontiersin.org/articles/10.3389/fneur.2022.970383/full

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.