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In recent years, we have seen healthcare systems collapse under the strain of natural disasters and armed conflict and hundreds of millions of people being forcibly displaced. So, how do we meet the healthcare needs of people in humanitarian disasters, let alone those living through these nightmares with a rare disease such as NMO? To talk about the unique challenges of diagnosing and treating rare conditions like NMO in these low-resource settings, we are joined by Dr. Farrah Mateen. She highlights common barriers such as lack of disease awareness, limited diagnostic testing availability, and restricted treatment access. Dr. Mateen also proposes concrete goals to better support patients facing the most challenging circumstances. 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: Farrah Mateen, MD, PhD Website - https://doctors.massgeneralbrigham.org/provider/Farrah+J+Mateen/255866 Global Neurology Research Group - www.massgeneral.org/neurology/research/global-neurology-research-group Twitter - https://twitter.com/FarrahMateen The Sumaira Foundation Website - www.sumairafoundation.org Facebook - www.facebook.com/TheSumairaFoundation LINKS: Mateen FJ. Neurological disorders in complex humanitarian emergencies and natural disasters. Ann Neurol. 2010 Sep;68(3):282-94. doi: 10.1002/ana.22135. PMID: 20818788. Mateen FJ. Neurocritical care in developing countries. Neurocrit Care. 2011 Dec;15(3):593-8. doi: 10.1007/s12028-011-9623-7. PMID: 21863357. Mateen FJ, Hanafi I, Birbeck GL, Saadi A, Schmutzhard E, Wilmshurst JM, Silsbee H, Jones LK Jr; AAN Quality Committee. Neurologic Care of Forcibly Displaced Persons: Emerging Issues in Neurology. Neurology. 2023 May 16;100(20):962-969. doi: 10.1212/WNL.0000000000206857. Epub 2023 Mar 1. PMID: 36859408; PMCID: PMC10186241. Mateen FJ. Rectifying global inequities in neuromyelitis optica diagnosis and treatment. Mult Scler. 2023 Jul;29(8):932-935. doi: 10.1177/13524585231179108. Epub 2023 Jun 10. PMID: 37300419. SUPPORT the Podcast Donate to Illuminate https://www.sumairafoundation.org/advocacy/donate/ CREDITS: Producer & Host - Brian Dawson Music - Denys Kyshchuk from Pixabay

We kick off Season 4 of the Demystifying NMO & MOG Podcast with a very special guest, Candice Galvan. Candice became an Ambassador for The Sumaira Foundation after her daughter was diagnosed with NMO. She joins us today to talk about her path to becoming an advocate and how she is helping care for others through her work as program manager for TSF’s Human Collective Project. 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: Candice’s Story https://www.sumairafoundation.org/bellas-nmo-story-in-this-family-we-fight-together/ 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: 00:01:34 Candice's Story 00:11:28 Becoming an Advocate 00:14:42 Explaining NMO to a 9-year-old 00:17:57 Medical Marijuana 00:22:10 TSF's Human Collective Project LINKS: Human Collective Project (HCP) Support Group Meetings https://www.sumairafoundation.org/community/human-collective-project-2/ SUPPORT the Podcast Donate to Illuminate https://www.sumairafoundation.org/advocacy/donate/ CREDITS: Producer & Host - Brian Dawson Music - Denys Kyshchuk from Pixabay

As we wrap up Season Three of the podcast, we are speaking with Amy Niles of the PAN Foundation. Amy is the Chief Advocacy and Engagement Officer, where she dedicates her time to building relationships, public policy, and advocacy initiatives. She joins us to discuss how PAN helps people manage the financial burden of chronic illnesses. Amy also explains important updates to Medicare and some new insurance practices that can be harmful to patients with life-threatening, chronic, and rare diseases. ABOUT US: The Demystifying NMO and MOG podcast is a Sumaira Foundation project and was made possible with the generous support of Genentech. SOCIAL & WEBSITE: Amy Niles & The PAN Foundation Website - https://www.panfoundation.org Facebook - https://www.facebook.com/PANFoundation Instagram - https://www.instagram.com/pan.foundation Twitter - https://twitter.com/pan_foundation Connect With Us Website - https://www.sumairafoundation.org Facebook - https://www.facebook.com/TheSumairaFoundation Instagram - https://www.instagram.com/demystifying_nmomog Twitter - https://twitter.com/DemystifyingNMO TIMESTAMPS 00:02:02 Amy Niles & The Pan Foundation 00:04:16 A Day in the Life 00:05:54 Serving the NMO Comunity 00:06:29 Eligibility Criteria 00:09:03 The Application Process 00:11:30 The Fund Finder 00:14:58 Medicare Updates 00:20:37 Copay Accumulators 00:24:49 Alternative Funding Programs 00:30:54 Do You Have a Copay Accumaltor? 00:32:32 Legislation to Protect Patients & What You Can Do LINKS: Fund Finder - https://www.panfoundation.org/find-disease-fund Find help with FundFinder - https://www.panfoundation.org/fundfinder Neuromyelitis Optica Spectrum Disorder - PAN Foundation - https://www.panfoundation.org/disease-funds/neuromyelitis-optica-spectrum-disorder Everything you need to know about Medicare reforms - PAN Foundation - https://www.panfoundation.org/everything-you-need-to-know-about-medicare-reforms Ask your elected officials to support The HELP Copays Act and ban copay accumulator programs - https://www.panfoundation.org/end-copay-accumulators CREDITS: Producer & Host - Brian Dawson Guest Photo - The PAN Foundation Music - Denys Kyshchuk from Pixabay

Episode 27 | Double Seronegative NMO In this episode, we look at Double Seronegative NMO. We are joined by Nicole Helton to give us the patient perspective. Then Dr. Sara Mariotto, to learn more about testing and the future of the disease. Finally, Sumaira Ahmed talks about her personal experiences as a Double Seronegative NMO patient and the importance of advocacy in research and ensuring patients have access to appropriate care. 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: Dr. Sara Mariotto Twitter - https://twitter.com/SaraMariottoMD Sumaira Ahmed Linkedin - https://www.linkedin.com/in/sumairaahmed/ Twitter - https://twitter.com/SumairaFlower Connect With Us Website - https://www.sumairafoundation.org Facebook - https://www.facebook.com/TheSumairaFoundation Instagram - https://www.instagram.com/demystifying_nmomog Twitter - https://twitter.com/DemystifyingNMO TIMESTAMPS/TOPICS: 00:01:30 Nicole Helton, Patient Experience 00:06:30 Self-doubt 00:08:14 Accessing Treatment 00:15:03 Dr. Sara Mariotto 00:15:22 Defining Double Seronegative NMO 00:21:42 Treatment 00:25:05 Diagnostic Guidelines 00:32:51 Research 00:37:27 Finding a Doctor and Resources 00:39:48 Sumaira Ahmed 00:42:04 Barriers to Care 00:43:10 Building Resources 00:47:03 Advocating for Double Seronegative NMO 00:50:39 Closing with Nicole Helton LINKS: Double seronegative NMOSD with Dr. EoinFlanagan - https://youtu.be/pdYMQImBHp0 Double Seronegative NMOSD Facebook Group - https://www.facebook.com/groups/6274134689359958 CREDITS: Producer & Host - Brian Dawson Music - Denys Kyshchuk from Pixabay

In the second part of our series on working with NMO and MOG, we are joined by Dr. Farrah Mateen. This year she published work that focuses on the socioeconomic impact of NMOSD on patients and caregivers. The work of Dr. Mateen and her team provides us with one of the most in-depth looks at the psychosocial toll, risks, unmet needs, and opportunity loss due to NMOSD. 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: Farrah Mateen, MD, PhD Website - https://doctors.massgeneralbrigham.org/provider/Farrah+J+Mateen/255866 Global Neurology Research Group - www.massgeneral.org/neurology/research/global-neurology-research-group Twitter - https://twitter.com/FarrahMateen Connect With UsWebsite - https://www.sumairafoundation.org Facebook - https://www.facebook.com/TheSumairaFoundation Instagram - https://www.instagram.com/demystifying_nmomog Twitter - https://twitter.com/DemystifyingNMO TIMESTAMPS/TOPICS: 00:01:15 Dr. Farrah Mateen 00:03:29 Impact of NMOSD on Employment 00:05:53 What We Can Learn From This Research 00:07:48 Barriers to Employment 00:10:45 Burden of Treatment 00:15:38 Time to Diagnosis 00:21:17 Age of Onset and Future Opportunities 00:24:48 The Role of Mental Health on Returning to Work 00:29:32 Unmet Needs 00:38:36 Disclosing Illness 00:41:11 Comparing NMOSD's Impact 00:44:49 Impact on Caregivers 02:34:00 Future of this Research LINKS: Mateen FJ, Trápaga Hacker CM. Understanding the employment impact of neuromyelitis optica spectrum disorder in the USA: Mixed methods. Front Neurol. 2023 Mar 9;14:1142640. doi: 10.3389/fneur.2023.1142640. PMID: 36970509; PMCID: PMC10033531. https://www.frontiersin.org/articles/10.3389/fneur.2023.1142640/full Trapaga Hacker CM, Hjerthen IG, Shirkoohi A, et al. Impact of NMOSD on employment: a global survey. Presented at: 2023 ACTRIMS Forum; February 23-25; San Diego, CA. Abstract P320. https://www.frontiersin.org/articles/10.3389/fneur.2023.1142640/full CREDITS: Producer & Host - Brian Dawson Guest Photo - Mass General Hospital Music - Denys Kyshchuk from Pixabay

Many people will recognize this episode’s guest as “Nell’s mom.” But today, we are focusing on the journey of Dr. Maggie Kang, whose world was shaken to its core when her daughter was diagnosed with NMOSD. Bogged down by the stress and the uncertainty of the future, she consulted a coach. Maggie soon realized she was the barrier to moving forward. The results were so profound she became a certified life coach focused on supporting the rare disease community, especially moms.Last year she shared her experiences at TEDxCherryCreekWomen, and she is here today to continue that conversation about how those early days impacted her family and, ultimately, what she learned that could help us all work through pain and suffering.ABOUT US:The Demystifying NMO and MOG podcast is a Sumaira Foundation (TSF) project andwas made possible with the generous support of Genentech.SOCIAL & WEBSITE:Maggie KangWebsite - https://maggiekangmd.comVoices of NMO - www.sumairafoundation.org/maggies_nmo_story_finding_miraclesTEDxCherryCreekWomen - https://youtu.be/Dgr_Ng9Dt6cConnect With UsWebsite - https://www.sumairafoundation.orgFacebook - https://www.facebook.com/TheSumairaFoundationInstagram - https://www.instagram.com/demystifying_nmomogTwitter - https://twitter.com/DemystifyingNMOTIMESTAMPS/TOPICS:00:00:59 Dr. Maggie Kang00:02:16 Nell's Story00:07:35 Changes in Family Dynamics00:10:11 Balancing Mom vs. Doctor00:11:58 Realizing You Need Help00:17:19 Not Everyday Will Be Rosy00:18:35 How Life Coaching Can Help00:20:48 Working Through Pain00:21:55 Writing Your Narrative00:26:04 The Ripple Effect of Finding Joy00:28:57 Responding With Pain and Suffering00:31:10 Mom GuiltLINKS:My Hospital Story by Nell Choi - https://www.amazon.com/My-Hospital-Story-Nell-Choi/dp/1982262842CREDITS:Producer & Host - Brian DawsonGuest Photo - Maggie KangMusic - Denys Kyshchuk from Pixabay

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