Demystifying NMO & MOG

In this episode, we are joined by Anessa Powell to discuss the many challenges that people with chronic illnesses face in the workplace, from disclosing their illnesses to finding opportunities and navigating professional relationships.Following her Addison’s Disease (Primary Adrenal Insufficiency) diagnosis, she focused on raising awareness that disabilities come in many forms. Her outreach efforts led Anessa and her husband, Bill, to create AllAbility Recruiting, where they strive to Leave No Ability Behind through disability employment, training, and consulting. ABOUT US: The Demystifying NMO and MOG podcast is a Sumaira Foundation (TSF) project and was made possible with the generous support of Genentech. SOCIAL & WEBSITE: Anessa Powell Website - https://allabilityrecruiting.com LinkedIn - https://www.linkedin.com/in/anessa-powell/ Demystifying NMO & MOG podcast Instagram - https://www.instagram.com/demystifying_nmomog Twitter - https://twitter.com/DemystifyingNMO The Sumaira Foundation Website - https://www.sumairafoundation.org Facebook - https://www.facebook.com/TheSumairaFoundation TIMESTAMPS/TOPICS: 00:00:49 Anessa Powell 00:10:45 Finding Opportunities 00:13:21 To Disclose or Not To Disclose 00:16:02 ADA, Protection for Employees & Employers 00:21:04 Accommodations 00:23:09 Managing Co-worker Relationships 00:28:54 Return to the Office 00:31:08 Post-COVID Work Etiquette 00:32:37 Breaking down Misconceptions and Barriers 00:38:10 How Organizations Can Access Untapped Potential 00:40:33 Young Adults and Entering the Workforce CREDITS: Producer & Host - Brian Dawson Cover Art - Sumaira Ahmed Guest Photo - Courtesy of AllAbility Recruiting

In this episode, we are joined by professional service dog trainer Leslie Horton to talk about all things service dogs, including what they are, legal protections, and training. We try to clear up some common misconceptions and touch on how they differ from emotional support animals, behavior standards in public, and being a “Certified” service dog. She owns Most Fine Canine in Frederick, Maryland, where she has spent over 20 years training and specializing in service dogs. She is certified as a dog trainer and service dog trainer and was inducted into the International Association of Canine Professionals (IACP) Hall of Fame. Leslie is also an R.N. and the Coordinator of Inova Fairfax Hospital’s Animal Assisted Care (AAC) program overseeing teams of handlers and dogs at the health system's four facilities. Leslie's experiences as a dog trainer, medical professional, and patient give her incredible insight on a topic where there is a lot of confusion and can be pretty emotional for people. ABOUT US: The Demystifying NMO and MOG podcast is a Sumaira Foundation (TSF) project and was made possible with the generous support of Genentech. STAY CONNECTED: Leslie Horton, IACP CDT, CDTA, PDTI, CSDT Website - https://www.mostfinecanine.net Facebook - https://www.facebook.com/HortonLeslieL Demystifying NMO podcast Instagram - https://www.instagram.com/demystifying_nmomog Twitter - https://twitter.com/DemystifyingNMO The Sumaira Foundation Website - https://www.sumairafoundation.org Facebook - https://www.facebook.com/TheSumairaFoundation TIMESTAMPS/TOPICS: 00:00:58 Leslie Horton 00:02:14 Service Dogs Vs. Emotional Support Animals 00:02:58 Where Can Service Dogs Go? 00:07:06 What Can A Business Ask? 00:08:32 "Certification" 00:08:51 Standards Of Behavior 00:10:55 Fake Service Dogs 00:18:24 What Is The Process Of Getting A Service Dog? 00:26:57 Training A Service Dog LINKS: ADA Requirements: Service Animals https://www.ada.gov/resources/service-animals-2010-requirements/ ADA Service Animal FAQ https://www.ada.gov/resources/service-animals-faqs/ IACP - Service Dogs Overview https://www.canineprofessionals.com/service-dogs-overview IACP - Business Resources Regarding Service Dogs https://www.canineprofessionals.com/business-resources-regarding-service-dogs CREDITS: Executive Producer - Host - Brian Dawson Music - Denys Kyshchuk from Pixabay

In this episode, Brian talks with Dr. Amy Sullivan about resilience and how chronic illness impacts mental health. In her role as an Associate Professor of Medicine and, the Director of Behavioral Medicine & Research at the Mellen Center for MS, Director of the Neurological Institute Engagement and Wellbeing, Dr. Sullivan works with patients and families dealing with the impact of illness. She has also become a leading voice in physician and caregiver self-care, burnout, and psychological health and spearheaded Mellen Center's efforts that led to the National Psychologically Healthy Workplace Award, Best Practice by the American Psychological Association. ABOUT US: The Demystifying NMO and MOG podcast is a project of the Sumaira Foundation (TSF) and was made possible with the generous support of Genentech. STAY CONNECTED: Amy Sullivan, PsyD, ABPP Website - https://my.clevelandclinic.org/staff/13526-amy-sullivan Twitter - https://twitter.com/DrAmyBSullivan Demystifying NMO podcast Instagram - https://www.instagram.com/demystifying_nmomog Twitter - https://twitter.com/DemystifyingNMO The Sumaira Foundation Website - https://www.sumairafoundation.org Facebook - https://www.facebook.com/TheSumairaFoundation TIMESTAMPS/TOPICS: 00:01:25 Dr. Amy Sullivan 00:01:49 What is Resilience? 00:03:52 Where Does Resilience Come From? 00:10:21 Resilience Fatigue 00:12:23 The Grieving Process in Chronic Illness 00:15:00 How to Center Yourself 00:16:33 Wellness 00:18:47 Motivation 00:19:56 Asking for Help 00:20:27 Caring for Caregivers & Breaking Down Stigmas CREDITS: Host - Brian Dawson Music - Denys Kyshchuk from Pixabay Guest Photo - Cleveland Clinic

In today’s episode, we welcome an award-winning physician, researcher, and educator, Dr. Aaron Boster. He is a board-certified Neurologist and the founder and President of the Boster Center for Multiple Sclerosis in Columbus, Ohio. We had the pleasure of catching up with Dr. Boster to talk about harnessing the power of social media to provide 24-7 access to information reliable, understandable medical information. He also breaks down the importance of clinical trials and walks us through each phase of a study and what a participant can expect. ABOUT US: The Demystifying NMO and MOG podcast is a project of the Sumaira Foundation (TSF) and was made possible with the generous support of Genentech. STAY CONNECTED: Aaron Boster, M.D. Website - https://bosterms.com Youtube - https://www.youtube.com/c/AaronBosterMD Twitter - https://twitter.com/AaronBosterMD Demystifying NMO podcast Instagram - https://www.instagram.com/demystifying_nmomog Twitter - https://twitter.com/DemystifyingNMO The Sumaira Foundation Website - https://www.sumairafoundation.org Facebook - https://www.facebook.com/TheSumairaFoundation The Connor B Judge Foundation Website - https://www.connorbjudgefoundation.org Facebook - https://www.facebook.com/cbjvnmo TIMESTAMPS/TOPICS: 00:00:21 Dr. Aaron Boster 00:01:54 Social Media for Patient Education 00:03:39 Being an Active Participant in Your Care 00:04:05 Shared Clinical Decision Making 00:05:21 Better Communication 00:07:21 Permission To Be Selfish 00:10:48 YouTube 00:11:29 Clinical Trials 00:12:25 The Importance of Being Part of Clinical Trials 00:13:34 The Phases of a Clinical Trial 00:21:00 Finding Clinical Trials 00:26:39 A Paradigm Shift 00:29:48Killing Old Myths LINKS: Dr. Noster’s Multiple Sclerosis Clinical Research YouTube Playlist https://youtube.com/playlist?list=PL3a4GpjWLtCiSkGgtl4UlnFFnk1Fhevkt CREDITS: Host - Chelsey Judge Editor - Brian Dawson Music - Denys Kyshchuk from Pixabay Guest Photo - Boster Center for Multiple Sclerosis

Brian spent more than twenty years working in emergency management as a paramedic & law enforcement officer before getting a Master’s degree in Library & Information Science. While serving as the Acting Deputy Secretary of Education for Libraries with the Pennsylvania Department of Education, a cold triggered an autoimmune response leaving him blind & paralyzed from the chest down. Following an NMO diagnosis, he needed to understand more about the disease. As an information professional, he was shocked that much of the information he got from his care team or found online was outdated, not supported by science, or just plain wrong. After eighteen months of relapses & research, a consultation with an NMO specialist led to a diagnosis of MOGAD & the proper treatment that gave him his life back. Brian & Chelsey talk about how critical it is to find reliable, scientifically based information to make the best decisions about your health. ABOUT US: Demystifying NMO & MOG is a Sumaira Foundation (TSF) project & made possible with the generous support of Genentech. STAY CONNECTED: Brian Dawson Twitter twitter.com/bkdawson1313 Website www.sumairafoundation.org/brians-mog-story-life-goes-on LinkedIn www.linkedin.com/in/briankdawson Demystifying NMO podcast Instagram www.instagram.com/demystifying_nmomog Twitter twitter.com/DemystifyingNMO The Sumaira Foundation Website www.sumairafoundation.org TIMESTAMPS: 00:01:17 Health Literacy? 00:04:02 Why is it so Important? 00:08:58 Impact on Health Outcomes 00:15:16 Important Questions to Ask 00:17:20 Provider Responsibility 00:20:36 Good vs. Bad Information 00:23:36 Science Evolves 00:26:08 Finding Good Information LINKS: Find your Local Library www.careeronestop.org/LocalHelp/CommunityServices/find-libraries.aspx TSF NMO Resources www.sumairafoundation.org/nmosd-resources TSF MOGAD Resources www.sumairafoundation.org/mogad-resources National Library of Medicine www.nlm.nih.gov/portals/public.html PubMed Database https://pubmed.ncbi.nlm.nih.gov/ Medline Plus https://medlineplus.gov CREDITS: Host -Chelsey Judge Producer - Brian Dawson Music - Denys Kyshchuk from Pixabay

Season three starts with big news about the podcast. We talk with Sumaira Ahmed of The Sumaira Foundation about the podcast's growth and inclusivity and introduce a new co-host, Brian Dawson. Then we were joined by one of the leading NMO and MOG researchers, Michael Levy, MD, Ph.D. Dr. Levy is the Research Director of the Division of Neuroimmunology & Neuroinfectious Disease at Massachusetts General Hospital and is an Associate Professor at Harvard Medical School. ABOUT US: The Demystifying NMO and MOG podcast is a project of the Sumaira Foundation (TSF) and was made possible with the generous support of Genentech. STAY CONNECTED: Michael Levy, MD, Ph.D Twitter - https://twitter.com/mlevy18 Website - https://doctors.massgeneralbrigham.org/provider/Michael+Levy/1090088 Demystifying NMO and MOG Podcast Instagram - https://www.instagram.com/demystifying_nmomog Twitter - https://twitter.com/DemystifyingNMO Website - https://www.sumairafoundation.org/awareness/demystifying-nmo/ The Sumaira Foundation Website - https://www.sumairafoundation.org Facebook - https://www.facebook.com/TheSumairaFoundation TIMESTAMPS: 00:00:00 Launching Season 3 with Big News 00:01:00 The Merger 00:01:48 NMO & MOG, All In It Together 00:04:08 New Co-Host 00:05:26 A Preview of Season 3 00:07:00 Michael Levy, MD, Ph.D. 00:08:05 From MS to NMO, to MOG. 00:09:54 NMO & MOG Overlaps 00:11:47 Different Mechanisms, Similiar Outcomes 00:13:05 Diagnostic Differences 00:14:28 MOG ~vs~ MS 00:17:22 Longterm Outcomes 00:19:30 Being Misdiagnosed 00:21:22 Treatment Overlaps 00:24:44The Future of MOG & Clinical Trials LINKS: NMOSD Resources - https://www.sumairafoundation.org/nmosd-resources/ MOGAD Resources - https://www.sumairafoundation.org/mogad-resources/ CREDITS: Host - Chelsey Judge Producer & Co-Host - Brian Dawson Music - Music by Denys Kyshchuk from Pixabay Guest Photo - The Sumaira Foundation

In the season finale of season 2, Chelsey reviews the topics covered and seeks feedback from listeners for season 3! To top off season 2, Demystifying NMO features Nell Choi, who shares her powerful and inspiring NMO story and optimistic perspective. Nell is a 13 year old accomplished NMOSD patient advocate. She is a published author of 'My Hospital Story', aiming to foster connection with others going through similar traumatic health journeys. She has also brought national awareness of NMO by appearing on CBS evening news to share her story. Recently, she met with President Joe Biden and First Lady Jill Biden, presenting them with a copy of her book. In a candid chat with Chelsey, Nell shares: At 9 years old, Nell faced the mysterious and confusing onset of NMO, hospitals and the overall healthcare system. Of note, pediatric cases makes up about 3-5% of NMOSD. Nell coped through journaling and finding gratitude for her parents and the gifts she would find through her journey, including finding connection in the NMO community, as well as herself and core values through the adversity. Her authorship of 'My Hospital Story' taught her the importance of connection with others, and that we all have the power to make an impact. Nell's hopes for the future of the NMO community include finding a cure and making sure all impacted by NMO are able to share their story to become more connected. To learn more about pediatric NMO, here is a scientific journal mentioned in this episode: https://www.frontiersin.org/articles/10.3389/fped.2020.00339/full

Part 2 of our conversation on the NMOSD diagnosis, we discuss the personal 'what now?' element...On the individual level, what does coping and living with a newly obtained NMOSD diagnosis look like? What can you do about it? To answer these questions, Demystifying NMO is delighted to have guest Taylor Ann Macey on the pod to discuss her personal patient experience with her NMOSD diagnosis. Taylor is a wife, mother, Brigham Young University graduate and life coach, with an educational background in fitness and nutrition, Taylor is candid about her NMOSD diagnosis story: What her journey to the NMOSD diagnosis looked like How she coped with her new life post NMOSD diagnosis Controlling what you can by implementing an integrative approach to NMOSD: Building a trusted clinical care team that incorporates acute relapse management with preventative treatment based on shared decisions Movement! Being mindful and respectful of your body's capabilities and limits, while moving/exercising as you can to show your body love and improve outcome Good, well-balanced nutrition Focusing on your mental and emotional health! Going inward to process difficult life events like an NMOSD diagnosis is critical, and finding a trusted therapist can be impactful and helpful. Approaches to identifying all the misinformation on the internet!

In this episode, host Chelsey chats with NMOSD patient and pediatric hematologist Dr. Joanna Robles about her unique perspective and experience obtaining her NMOSD diagnosis. In their discussion, they review: Important considerations for clinicians who make the NMOSD diagnosis and provide car Overview of the educational and training pathway for clinicians, including neurologists Review of the International Diagnostic Criteria for NMOSD: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4515040/ Highlight the importance of a swift and accurate NMOSD diagnosis for appropriate treatment and management Stay turned for a follow-up part 2 episode, in which Chelsey will chat with another NMOSD patient on 'After the NMOSD Diagnosis: Controlling What You Can.'

Embrace your inner nerd with host and CBJF scientific advisor Chelsey (PhD immunologist) as she reviews the emerging science and hot topics recently shared at the virtual European Committee for the Treatment and Research in MS (ECTRIMS). This is a major scientific meeting where clinicians and scientists in the field of central nervous system (CNS) diseases/disorders meet to share their recent data and findings with each other. Chelsey breaks down 4 buckets of NMOSD-related research topics: NMOSD- and MOG-associated disorders: overlaps and distinctions Unraveling complexities of NMOSD Data updates on currently FDA-approved NMOSD treatments Neurodegeneration and demyelination in the CNS: Potential treatment targets in neuroregenerative processes

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 phenomenon Heat-related symptoms vs relapse Managing heat, especially on a hot summer day Where to find at-no-cost cooling vests Impact of cold on symptoms and how to manage

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?

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.

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.

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.

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.

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!

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.

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?

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.