The Sumaira Foundation and Connor B. Judge Foundation are proud to present Demystifying NMO, a podcast series aimed at simplifying scientific jargon associated with NMOSD, facilitating better understanding for patients and their caregivers, and fostering greater connectivity among the community.
Through this collaborative effort, both TSF and CBJF hope to provide relevant and credible scientific information in a patient-friendly way.
Episode 1: Autoimmune Disease and NMOSD Overview
The Sumaira Foundation and Connor B Judge Foundation are proud to present their first episode of their new joint podcast, Demystifying NMO! Follow along with Austin Hoover, who lives with multiple sclerosis (the "cousin" of NMO), and Chelsey Judge, PhD immunologist, as they chat about the basic science of autoimmune disease and NMO. They'll cover 3 main questions:
- What is an autoimmune disease?
- How does autoimmunity happen?
- How does the immune response contribute to NMO?
Glossary of Key Terms Discussed:
Antigen: a particular component of a molecule/substance that the immune system recognizes
Autoimmune disease: when the immune system targets some component of its own body and reacts against it
Immune tolerance: when the immune system decides not to react against an antigen; ‘don’t react’
Anergy: when an immune cell becomes exhausted or functionless
Serum: a component of the blood that contains proteins, including antibodies
Seropositive: NMOSD patients who have the autoreactive AQP4 antibody in their serum
Seronegative: NMOSD patients who do not have the anti-AQP4 antibody in their serum
Episode 2: NMO Treatments: Acute vs Maintenance
Episode 2 of Demystifying NMO by The Sumaira Foundation (TSF) for NMO and Connor B Judge Foundation (CBFJ) focuses on NMO Treatments: Acute vs Maintenance. Follow along to hear a candid conversation between Connor, of the CBJF and NMO patient, and his sister Chelsey, also scientific advisor with the CBJF. In their discussion, they talk about the differences in treatments to manage an active relapse versus to help prevent relapse.
Glossary of Terms Used
AQP4: aquaporin-4; a water channel protein found in the CNS; antibodies can be made against this in NMOSD patients
B-cell: a white blood cell that is a key component of the adaptive immune system and makes antibodies
Immunosuppressant: a medication that reduces/supresses the function of some immune system component
MOG: myelin-oligodendrocyte glycoprotein; a myelin protein; antibodies can be made against this in some NMOSD patients
Relapse: clinical disease activity/clinical worsening
Episode 3: Gratitude through NMO
In episode 3 of Demystifying NMO, Chelsey shares her conversations with 3 inspiring individuals living with NMOSD: Chelsey Tucker, Ron Crowe and Marie Newbrough. In their chats, they share their experiences and emotional journeys through finding their NMO diagnosis and coping with the loss of their old lives. Each tell how they have worked to manage these whirlwind emotions, and have even found new perspectives that in some ways make them find gratitude in the new lives. We hope you appreciate this very special Thanksgiving episode.
Episode 4: Let's Talk About Sex, Baby
Sexual dysfunction is a common invisible symptom in NMOSD, but given the intimate nature of the topic, it's not discussed as much as it should. What exactly is sexual dysfunction? What causes it? What can be done about it? Hear the answers in a discussion between Chelsey and Dr. Tamara Kaplan, a neurologist at Brigham and Women's Hospital and assistant professor in neurology at Harvard Medical School. Dr. Kaplan shares her expertise in treating NMOSD and MS patients, including managing sexual dysfunction.