Feeling the heat this summer?! People living with NMOSD/MS can experience sensitivity to temperature, particularly extremely hot or cold temperatures. In this episode, Chelsey chats with TSF ambassadors Julie Aldridge and Alexis (aka Lexi) Marta about their experiences living with NMOSD and managing temperature sensitivity. They cover:Impact of heat on NMOSD symptoms aka Uhtoff's phenomenonHeat-related symptoms vs relapseManaging heat, especially on a hot summer dayWhere to find at-no-cost cooling vestsImpact of cold on symptoms and how to manage

Demystifying NMO

Too Hot to Handle

In this episode, we focus on a rare population: men with NMO! NMO overwhelming affects women compared to men, and we wanted to tap into the male outlook and experiences living with NMO. Host Chelsey is joined by her brother, Connor Judge, a 28 year old man living with NMO to share his male perspectives:What’s it like to be in a sea of women?How does NMO and treatments impact identity?What are the differences between the societal image of being a man vs being a man with NMO?Adapting to work and earning income before and after NMO?What's it like to date and talk about NMO to potential partners?How do you manage relationships with friends and family?

Dude with NMO

In this episode, host Chelsey gets candid on all things related to women's health and NMOSD with Sumaira Foundation Ambassador Chelsey Tucker (TN) and Dr. Tamara Kaplan, neurologist at Brigham and Women's Hospital and associate neurology professor with Harvard Medical School. Topics covered are body image and emotional well-being, NMO treatment impacts on sexual identity, effect of NMO on periods, fertility & family planning, as well as the economic impact of navigating life as a woman with NMO. Dr. Kaplan and Chelsey T, both moms, also provide their insights on motherhood through NMO. Listen along to find out how you can befriend your 'inner mean girl' and empower your sense of identity and femininity.

Girl Power: Women's Health and NMO

In this episode, Sumaira Foundation for NMO Patient Ambassadors Julie Aldridge, Kristen Hewitt and Alexis Marta share with host Chelsey their experiences navigating relationships with NMOSD. Together, they take a personal look at how NMO has shaped their friendships, ties with family, as well as with co-workers, classmates and professors. They discuss the strengths of communication, honesty and advocacy in their relationships, and how NMO has amplified them. 

Interpersonal Relationships and NMO

The Covid-19 pandemic has ravaged the world, and while we're going through another dark surge, there is hope- vaccines. The FDA just authorized and approved the first Covid-19 vaccine. While this is exciting, it also brings up a lot of questions, especially for people in the NMO community. In this episode, host Chelsey, PhD immunologist, chats with Sumaira on the basics of vaccines, and then talks with neuroimmunologist and NMO clinician Mary Rensel, MD of the Cleveland Clinic Mellen Center. Sumaira and Chelsey cover the basics on vaccines: What are vaccines? What's protective immunity? What's herd immunity? What're the types of vaccines? What's the Covid vaccine timeline of distribution look like?Dr. Rensel offers her clinical insight to discuss general vaccine considerations and recommendations for the NMO community, including: What are vaccine recommendations for NMO patients? Do NMO treatments affect vaccine response? Or safety concerns? Is there an effect of vaccines on NMO relapse?Please remember that the goal of this podcast is to educate and empower you to make the most informed decisions with your health care provider. This is not medical advice- please follow up with your health care team.*Chelsey is a medical science liaison with Sanofi-Genzyme, and her role in the CBJF is independent of Sanofi-Genzyme, and views/content shared do not reflect Sanofi-Genzyme.

Vaccine Preparedness

In the season finale of season 1, Chelsey chats with Sumaira Ahmed of The Sumaira Foundation (TSF) for NMO for a recap on Demystifying NMO. Sumaira shares her insights as both an NMO patient, TSF founder and community leader. Chelsey and Sumaira rehash the episodes and provide their take-aways. They review the goals of the podcast, what they learned throughout the season, their favorite moments, optimism for the NMO community and what's to come.

Can't Stop; Won't Stop!

In this episode, host Chelsey talks all things related to NMO pain with Dr. Shamik Bhattacharyya, a neurologist at Brigham and Women's Hospital and assistant professor of neurology at Harvard Medical School. Chelsey learns that pain is very prevalent in NMOSD, and presents itself in many ways. They chat a bit about the science of NMO-related pain, exploring how and why it's different than pain related to multiple sclerosis. Although there is no 'magic bullet' to wipe out NMO-pain, Dr. Bhattacharyya talks through the number of ways to manage chronic pain including lifestyle changes, medications, devices and complementary treatments. Dr. Bhattacharyya also answers questions on opiates (not to be used as backbone of pain management and used sparingly!), medical cannabis, cryotherapy and mindfulness. Lots to learn!

What a Pain in my NMO!

In this episode, Chelsey chats with Marissa Shackleton, Executive Director at the Elliot Lewis Center in Massachusetts. Marissa has 8 years of experience working with patients with NMO and multiple sclerosis and is active with the National MS Society and National Infusion Center Association. She’s a national speaker on access, reimbursement, infusion centers and practice management, and is passionate about patient care and access to affordable treatment. Marissa provides insight on insurance- What’s a deductible? What’s a premium? Any tips to choosing an insurance plan? What’s the difference between Medicaid and Medicare? What are some best practices to managing insurance and making sure treatment is approved? What financial options are available for treatment?In light of the COVID19 pandemic, Marissa also provides specific information regarding navigating healthcare and patient access in the era of this new virus, including insights on relevant aspects of the new legislation passed by Congress in response to the pandemic, the Families First Coronavirus Response Act.

Episode 7: Navigating the Insurance Labyrinth, with COVID19 in Mind

Chelsey again speaks with Dr. Kaplan and Dr. Galetta, both practicing neurologists at Brigham and Women's Hospital and associated with Harvard Medical School. On this episode, they focus their discussion on postpartum considerations in NMOSD patients. They chat about topics that women living with NMO may experience immediately following giving birth. Questions covered: What do I need to know about breastfeeding? What do we know about treatment safety with breastfeeding? What about managing NMO symptoms postpartum? Postpartum depression? Who can provide support and help? Is NMO heritable?

Episode 6: Docs' Perspective on NMO, Postpartum

On this episode, Chelsey follows up on the topic of sex and NMO and gets into a discussion on pregnancy with NMO. Chelsey explores this topic with Tamara Kaplan, MD and Kristin Galetta, MD, both practicing at Brigham and Women's Hospital and associated with Harvard Medical School. They discuss managing NMO treatments with pregnancy, how to treat a relapse while pregnant, potential safety concerns and more. Both Dr. Kaplan and Dr. Galetta emphasize that a successful pregnancy is possible while managing NMO, but it's crucial to have a planned approach with a trusted clinician. Listen for an in-depth talk that aims to inform about many key questions on NMO and pregnancy.

Episode 5: What to Expect When You're Expecting with NMO

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.

Episode 4: Let's Talk About Sex, Baby

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 3: Gratitude through NMO

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 2: NMO Treatments: Acute vs Maintenance

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: 1) What is an autoimmune disease? 2) How does autoimmunity happen? 3) 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 1: Autoimmune Disease and NMOSD Overview

Neuromyelitis Optica Spectrum Disorder (NMOSD) is a neurological autoimmune disease that causes blindness and paralysis. While NMOSD is a rare disease, autoimmune diseases are common, and so is finding scientific and medical jargon tricky to understand. In this podcast, The Sumaira Foundation and Connor B J Foundation work to simplify the science associated with NMOSD and related neuro-immune disorders, bringing together patients and experts.

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Demystifying NMO

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