Demystifying NMO & MOG

di 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 ...   ...  Leggi dettagli
Medicina
Scienze naturali

Episodi del podcast

  • Stagione 4

  • Episode #32 | Beyond Words: The Silent Support of Animal Companions

    Episode #32 | Beyond Words: The Silent Support of Animal Companions

    S04 E04
    47:20

    In this emotional episode, we delve into the profound relationship between pets and mental health. Starting with the TSF AMbassador for New Mexico, Marie Abrego talks about the recent loss of her dachshund Bambi while traveling to raise awareness about NMO. Then, we are joined by TSF Ambassador for Illinois, AnneMarie Nawrocki, a licensed social worker and TSFs ambassador for Illinois; they explore the multifaceted benefits of pet ownership for individuals with disabilities and chronic illnesses. From reducing stress and providing emotional support to promoting opportunities to enhance physical health and promoting social connection, pets play a crucial role in improving overall well-being. The discussion also touches on coping with the loss of a beloved pet, highlighting the unique grieving process and the importance of support from friends and family. Through personal anecdotes and expert insights, this episode celebrates the transformative power of the human-animal bond in navigating life's challenges. 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: Marie Abrego Website - t.ly/ndARI Twitter - https://twitter.com/nmo_marie AnneMarie Nawrocki Website - t.ly/RN2TD LinkedIn - www.linkedin.com/in/annemarie-nawrocki-5426b7120/ 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 TIMESTAMP: 00:01:03 Marie Abrego 00:04:06 Marie & Bambi 00:20:42 AnneMarie Nawrocki 00:23:37 Pets & Wellbeing 00:27:13 Physical benefits 00:35:57 Loss of a Pet 00:39:29 Coping with the Inevitable 00:42:03 Supporting a Grieving Pet Owner SUPPORT THE PODCAST: Donate to Illuminate https://www.sumairafoundation.org/advocacy/donate/ CREDITS: Producer & Host - Brian Dawson Music - Denys Kyshchuk from Pixabay

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

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

    S04 E03
    39:50

    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

    S04 E02
    54:41

    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

    S04 E01
    38:26

    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

  • Stagione 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

    S03 E10
    38:05

    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