Demystifying NMO & MOG

Demystifying NMO & MOG

por The Sumaira Foundation
MedicinaCiencias Naturales
Temporada 4
Episode #36 | When Disaster Strikes: Emergency Planning for People with Disabilities
In this episode, we discuss emergency preparedness and inclusivity with our guest, Brian Kosczuk, a second-generation paramedic and Pennsylvania EMS Educator of the Year. Brian shares how living with a rare disease, myositis, and being a cardiac arrest survivor have allowed him to see different perspectives and how that shapes his role as a first responder, educator, and advocate. Brian also discusses the challenges and solutions for ensuring emergency alerts and responses are accessible to people with disabilities. From adaptive technologies to the role of local emergency managers in accommodating specific needs, he provides valuable insights into making emergency services more inclusive. Tune in as he gets us thinking about how to prepare for the worst. 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: Brian Kosczuk LinkedIn - https://tinyurl.com/2he45j6n Demystifying NMO podcast Instagram - www.instagram.com/demystifying_nmomog Twitter - twitter.com/DemystifyingNMO The Sumaira Foundation Website - www.sumairafoundation.org Facebook - www.facebook.com/TheSumairaFoundation Voices of NMO & MOG - www.sumairafoundation.org/awareness/voices-of-nmo/ ADDITIONAL LINKS Preparing for Disaster for People with Disabilities and Other Special Needs (FEMA and the American Red Cross) https://tinyurl.com/ycjpxga2 People with Disabilities (U.S. Dept. of Homeland Security) https://www.ready.gov/disability Disability and Health Emergency Preparedness (CDC) https://tinyurl.com/yg73h3uu SUPPORT THE PODCAST Donate to Illuminate https://www.sumairafoundation.org/advocacy/donate/ CREDITS: Producer & Host - Brian Dawson Music - Denys Kyshchuk from Pixabay
T4 · E8
3 jul 2024
36:41
Episode #35 | Movement as Medicine w/ Dr. Gretchen
In this episode, we talk about how physical therapy can help people with demyelinating diseases, disabilities, and chronic illnesses. Some of you may recognize her from social media as Dr. Gretchen, who shares excellent videos about PT and exercise as part of her MSing Link wellness program. Gretchen Hawley is a Doctor of Physical Therapy and a Multiple Sclerosis Certified Specialist. She has been a keynote speaker at several MS conferences and a popular guest lecturer at educational events and MS support groups. She shares her thoughts on how a holistic approach to physical therapy that emphasizes the importance of adaptive strategies tailored to each individual's needs can make a difference by improving mobility, independence, and overall quality of life. 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. Gretchen Hawley Website - www.drgretchenhawley.com Facebook - www.facebook.com/DrGretchenPT Instagram - www.instagram.com/doctor.gretchen Twitter - x.com/DrGretchenPT Youtube - www.youtube.com/c/DoctorGretchenHawley Demystifying NMO podcast Instagram - www.instagram.com/demystifying_nmomog Twitter - twitter.com/DemystifyingNMO The Sumaira Foundation Website - www.sumairafoundation.org Facebook - www.facebook.com/TheSumairaFoundation Voices of NMO & MOG - www.sumairafoundation.org/awareness/voices-of-nmo/ TIMESTAMPS/TOPICS: 00:01:02 Dr. Gretchen 00:08:39 Neurplasticity 00:16:07 Rehab vs. Maintenance 00:20:05 Getting Started 00:23:27 PT for Better Quality of Life 00:25:59 Functional Exercise 00:29:33 Modifications Can Lead to Success 00:33:13 Heat Intolerance 00:35:28 Rest is Crucial 00:42:30Finding a PT ADDITIONAL LINKS: The MSing Link book - www.drgretchenhawley.com/the-msing-link-book SUPPORT THE PODCAST Donate to Illuminate https://www.sumairafoundation.org/advocacy/donate/ CREDITS: Producer & Host - Brian Dawson Music - Denys Kyshchuk from Pixabay
T4 · E7
19 jun 2024
49:07
Episode #34 | From Brain Fog to Clarity: Finding Voice and Purpose w/ Alanna Yee
In this episode, we are featuring Alanna Yee. The onset of autoimmune encephalitis and the frustrations leading to her diagnosis would change her life in ways she never could have imagined. These experiences inspired Alanna to begin sharing her own story to help others navigate similar challenges. Alanna generously shares her insights on how to effectively tell personal health stories. She guides us on where to begin, how to strike a balance, and how to respect our own privacy when sharing such personal narratives. Her perspective on the therapeutic value of sharing patient experiences and its potential to drive progress for rare diseases is truly enlightening. 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: Alanna Yee Facebook - https://www.facebook.com/wherearemypillows Instagram - www.instagram.com/wherearemypillows Twitter - twitter.com/wampillows Demystifying NMO podcast Instagram - www.instagram.com/demystifying_nmomog Twitter - twitter.com/DemystifyingNMO The Sumaira Foundation Website - www.sumairafoundation.org Facebook - www.facebook.com/TheSumairaFoundation Voices of NMO & MOG - www.sumairafoundation.org/awareness/voices-of-nmo/ TIMESTAMPS/TOPICS: 00:01:27 Alanna Yee 00:08:08 How To Start Sharing Our Experiences 00:11:45 More Than Words, Other Ways To Tell Our Stories 00:16:11 Facts & Emotions 00:23:53 Authenticity And Privacy 00:29:41 Advice For People Considering Sharing Their Health Stories ADDITIONAL LINKS The profoundly personal side of rare disease: Humanizing the therapeutic journey of patients from Science Magazine, a peer-reviewed academic journal by the American Association for the Advancement of Science. t.ly/Llg1U SUPPORT THE PODCAST Donate to Illuminate https://www.sumairafoundation.org/advocacy/donate/ CREDITS: Producer & Host - Brian Dawson Music - Denys Kyshchuk from Pixabay
T4 · E6
29 may 2024
33:19
Episode #33 | From Patient to Practitioner w/ Roselyne
This week's episode offers a compelling narrative for both patients and clinicians as we delve into Roselyne's extraordinary journey. Diagnosed with Neuromyelitis Optica (NMO) as a young adult, she would later decide to pursue a career as a physician. Throughout her journey, Roselyne grappled with the psychological impact of straddling the roles of both clinician and patient, navigating feelings of guilt and obligation along the way. Roselyne emphasizes the importance of patient-provider communication and empathy in healthcare. She highlights the need for clinicians to convey diagnoses in a clear and compassionate manner, drawing from her own experiences of receiving life-altering news with nonchalance. Tune in as Roselyne shares her hard-won wisdom on navigating the complex intersection of healthcare and chronic illness. 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: Roselyne Instagram - https://www.instagram.com/roselyne_trains 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: 00:01:00 Roselyne 00:01:28 The Path to Being a Physician 00:04:29 Educating Others 00:06:14 Guilt and Obligation 00:10:03 Self-care in a Demanding Profession 00:14:48 Managing a Career with NMO 00:17:23 Improving Clinician - Patient Relationships 00:25:33 Learning to Accept Illness SUPPORT THE PODCAST Donate to Illuminate https://www.sumairafoundation.org/advocacy/donate/ CREDITS: Producer & Host - Brian Dawson Music - Denys Kyshchuk from Pixabay
T4 · E5
9 may 2024
29:09
Episode #32 | Beyond Words: The Silent Support of Animal Companions
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
T4 · E4
11 abr 2024
47:20
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
T4 · E3
13 mar 2024
39:50
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
T4 · E2
21 feb 2024
54:41
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
T4 · E1
29 ene 2024
38:26
Temporada 3
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
T3 · E10
30 ago 2023
38:05
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
T3 · E9
12 jul 2023
52:11
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