Demystifying NMO & MOG

by The Sumaira Foundation

Neuromyelitis Optica Spectrum Disorder (NMOSD) and Myelin Oligodendrocyte Glycoprotein antibody disease (MOGAD) are neurological autoimmune diseases that cause blindness and paralysis. While NMOSD and MOGAD are rare diseases, autoimmune diseases are common, and so is finding scientific and medical jargon tricky to understand. In this podcast, The Sumaira Foundation works to simplify the science associated with NMOSD, MOGAD, and ...   ...  Read more

Podcast episodes

  • Season 4

  • Episode #31 | EUPATI Education in Action: Leda's Path to Patient Advocacy

    Episode #31 | EUPATI Education in Action: Leda's Path to Patient Advocacy

    Episode #31 | EUPATI Education in Action: Leda's Path to Patient Advocacy In this episode, we delve into the world of patient advocacy with Leda Bresnov. Leda shares her transformative journey following her NMO diagnosis and the pivotal role patient advocacy and education played in reshaping her life. From her initial involvement as the Denmark Ambassador with the Sumaira Foundation to her experiences in EUPATI’s Patient Academy, Leda's dedication to raising awareness and empowering fellow patients is making a significant impact in healthcare. Join us as Leda offers her insights into the power of patient involvement in healthcare decision-making, highlighting the importance of education and advocacy in shaping the future of healthcare. 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: Leda Bresnov Website - https://www.sumairafoundation.org/ledas-nmo-story-i-want-to-live-while-i-live/ Instagram - https://www.instagram.com/bresnov/ Twitter -https://twitter.com/Bresnov 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: 00:01:14 Leda Bresnov 00:04:36 EUPATI Patient Expert Training Programme 00:07:21 Patient Expert Training Programme 00:11:02 Patient Input and Drug Development 00:23:39 Self-Advocacy & Involvement in Healthcare Decision-Making LINKS: EUPATI - https://eupati.eu/ European NMOSD Toolkit - https://www.nmosd-in-focus.com/-/media/Themes/Horizon/nmosd-in-focus-com/nmosd-in-focus-com/Documents/European-NMOSD-Patient-Toolkit.pdf SUPPORT the Podcast Donate to Illuminate https://www.sumairafoundation.org/advocacy/donate/ CREDITS: Producer & Host - Brian Dawson Music - Denys Kyshchuk from Pixabay

  • Episode #30 | Navigating NMO in Challenging Circumstances: Global Inequities in Care

    Episode #30 | Navigating NMO in Challenging Circumstances: Global Inequities in Care

    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

  • Episode #29 | Caregivers: Nobody Fights Alone

    Episode #29 | Caregivers: Nobody Fights Alone

    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

  • Season 3

  • Episode 28 | Financial Assistance For NMO & Critical Insurance Updates w/ the Pan Foundation

    Episode 28 | Financial Assistance For NMO & Critical Insurance Updates w/ the Pan Foundation

    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

    Episode 27 | Double Seronegative NMO

    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