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 related neuro-immune disorders, bringing together patients and experts.
Demystifying NMO & MOG
Claim This Podcastby The Sumaira Foundation
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36 episodes
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Podcast Overview
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 related neuro-immune disorders, bringing together patients and experts.
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Publishing Since
9/23/2019
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Recent Episodes
July 3, 2024
Episode #36 | When Disaster Strikes: Emergency Planning for People with Disabilities
<p>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.</p><p>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.</p><p>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.</p><p>Tune in as he gets us thinking about how to prepare for the worst.</p><p></p><p><strong>ABOUT US:</strong></p><p>The <em>Demystifying NMO and MOG</em> podcast is a Sumaira Foundation (TSF) project and</p><p>was made possible with the generous support of Genentech.</p><p></p><p><strong>SOCIAL & WEBSITE:</strong></p><p>Brian Kosczuk</p><p>LinkedIn - <a target="_blank" rel="noopener noreferrer nofollow" href="https://tinyurl.com/2he45j6n">https://tinyurl.com/2he45j6n</a></p><p></p><p>Demystifying NMO podcast</p><p>Instagram - <a target="_blank" rel="noopener noreferrer nofollow" href="http://www.instagram.com/demystifying_nmomog">www.instagram.com/demystifying_nmomog</a></p><p>Twitter - <a target="_blank" rel="noopener noreferrer nofollow" href="http://twitter.com/DemystifyingNMO">twitter.com/DemystifyingNMO</a></p><p></p><p>The Sumaira Foundation</p><p>Website - <a target="_blank" rel="noopener noreferrer nofollow" href="http://www.sumairafoundation.org">www.sumairafoundation.org</a></p><p>Facebook - <a target="_blank" rel="noopener noreferrer nofollow" href="http://www.facebook.com/TheSumairaFoundation">www.facebook.com/TheSumairaFoundation</a></p><p>Voices of NMO & MOG - <a target="_blank" rel="noopener noreferrer nofollow" href="http://www.sumairafoundation.org/awareness/voices-of-nmo/">www.sumairafoundation.org/awareness/voices-of-nmo/</a></p><p></p><p><strong>ADDITIONAL LINKS</strong></p><p>Preparing for Disaster for People with Disabilities and Other Special Needs</p><p>(FEMA and the American Red Cross)</p><p><a target="_blank" rel="noopener noreferrer nofollow" href="https://tinyurl.com/ycjpxga2">https://tinyurl.com/ycjpxga2</a></p><p></p><p>People with Disabilities (U.S. Dept. of Homeland Security) <a target="_blank" rel="noopener noreferrer nofollow" href="https://www.ready.gov/disability">https://www.ready.gov/disability</a></p><p></p><p>Disability and Health Emergency Preparedness (CDC)</p><p><a target="_blank" rel="noopener noreferrer nofollow" href="https://tinyurl.com/yg73h3uu">https://tinyurl.com/yg73h3uu</a></p><p></p><p><strong>SUPPORT THE PODCAST</strong></p><p><a target="_blank" rel="noopener noreferrer nofollow" href="https://www.sumairafoundation.org/advocacy/donate/">Donate to Illuminate</a></p><p><a target="_blank" rel="noopener noreferrer nofollow" href="https://www.sumairafoundation.org/advocacy/donate/">https://www.sumairafoundation.org/advocacy/donate/</a></p><p></p><p><strong>CREDITS:</strong></p><p>Producer & Host - <a target="_blank" rel="noopener noreferrer nofollow" href="mailto:brian@sumairafoundation.org">Brian Dawson</a></p><p>Music - Denys Kyshchuk from Pixabay</p>
June 19, 2024
Episode #35 | Movement as Medicine w/ Dr. Gretchen
<p>In this episode, we talk about how physical therapy can help people with demyelinating diseases, disabilities, and chronic illnesses.</p><p>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.</p><p>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.</p><p>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.</p><p></p><p><strong>ABOUT US:</strong></p><p>The <em>Demystifying NMO and MOG</em> podcast is a Sumaira Foundation (TSF) project and</p><p>was made possible with the generous support of Genentech.</p><p></p><p><strong>SOCIAL & WEBSITE:</strong></p><p></p><p>Dr. Gretchen Hawley</p><p>Website - <a target="_blank" rel="noopener noreferrer nofollow" href="http://www.drgretchenhawley.com">www.drgretchenhawley.com</a></p><p>Facebook - <a target="_blank" rel="noopener noreferrer nofollow" href="http://www.facebook.com/DrGretchenPT">www.facebook.com/DrGretchenPT</a></p><p>Instagram - <a target="_blank" rel="noopener noreferrer nofollow" href="http://www.instagram.com/doctor.gretchen">www.instagram.com/doctor.gretchen</a></p><p>Twitter - <a target="_blank" rel="noopener noreferrer nofollow" href="http://x.com/DrGretchenPT">x.com/DrGretchenPT</a></p><p>Youtube - <a target="_blank" rel="noopener noreferrer nofollow" href="http://www.youtube.com/c/DoctorGretchenHawley">www.youtube.com/c/DoctorGretchenHawley</a></p><p></p><p>Demystifying NMO podcast</p><p>Instagram - <a target="_blank" rel="noopener noreferrer nofollow" href="http://www.instagram.com/demystifying_nmomog">www.instagram.com/demystifying_nmomog</a></p><p>Twitter - <a target="_blank" rel="noopener noreferrer nofollow" href="http://twitter.com/DemystifyingNMO">twitter.com/DemystifyingNMO</a></p><p></p><p>The Sumaira Foundation</p><p>Website - <a target="_blank" rel="noopener noreferrer nofollow" href="http://www.sumairafoundation.org">www.sumairafoundation.org</a></p><p>Facebook - <a target="_blank" rel="noopener noreferrer nofollow" href="http://www.facebook.com/TheSumairaFoundation">www.facebook.com/TheSumairaFoundation</a></p><p>Voices of NMO & MOG - <a target="_blank" rel="noopener noreferrer nofollow" href="http://www.sumairafoundation.org/awareness/voices-of-nmo/">www.sumairafoundation.org/awareness/voices-of-nmo/</a></p><p></p><p><strong>TIMESTAMPS/TOPICS:</strong></p><p>00:01:02 Dr. Gretchen</p><p>00:08:39 Neurplasticity</p><p>00:16:07 Rehab vs. Maintenance</p><p>00:20:05 Getting Started</p><p>00:23:27 PT for Better Quality of Life</p><p>00:25:59 Functional Exercise</p><p>00:29:33 Modifications Can Lead to Success</p><p>00:33:13 Heat Intolerance </p><p>00:35:28 Rest is Crucial</p><p>00:42:30Finding a PT</p><p></p><p><strong>ADDITIONAL LINKS:</strong></p><p>The MSing Link book - <a target="_blank" rel="noopener noreferrer nofollow" href="http://www.drgretchenhawley.com/the-msing-link-book">www.drgretchenhawley.com/the-msing-link-book</a></p><p></p><p><strong>SUPPORT THE PODCAST</strong></p><p>Donate to Illuminate</p><p><a target="_blank" rel="noopener noreferrer nofollow" href="https://www.sumairafoundation.org/advocacy/donate/">https://www.sumairafoundation.org/advocacy/donate/</a></p><p></p><p><strong>CREDITS:</strong></p><p>Producer & Host - <a target="_blank" rel="noopener noreferrer nofollow" href="mailto:brian@sumairafoundation.org">Brian Dawson</a></p><p>Music - Denys Kyshchuk from Pixabay</p>
May 29, 2024
Episode #34 | From Brain Fog to Clarity: Finding Voice and Purpose w/ Alanna Yee
<p>In this episode, we are featuring Alanna Yee.</p><p>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.</p><p>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.</p><p></p><p><strong>ABOUT US:</strong></p><p>The <em>Demystifying NMO and MOG</em> podcast is a Sumaira Foundation (TSF) project and was made possible with the generous support of Genentech.</p><p></p><p><strong>SOCIAL & WEBSITE:</strong></p><p>Alanna Yee</p><p>Facebook - <a target="_blank" rel="noopener noreferrer nofollow" href="https://www.facebook.com/wherearemypillows">https://www.facebook.com/wherearemypillows</a></p><p>Instagram - <a target="_blank" rel="noopener noreferrer nofollow" href="http://www.instagram.com/wherearemypillows">www.instagram.com/wherearemypillows</a></p><p>Twitter - <a target="_blank" rel="noopener noreferrer nofollow" href="http://twitter.com/wampillows">twitter.com/wampillows</a></p><p></p><p>Demystifying NMO podcast</p><p>Instagram - <a target="_blank" rel="noopener noreferrer nofollow" href="http://www.instagram.com/demystifying_nmomog">www.instagram.com/demystifying_nmomog</a></p><p>Twitter - <a target="_blank" rel="noopener noreferrer nofollow" href="http://twitter.com/DemystifyingNMO">twitter.com/DemystifyingNMO</a></p><p></p><p>The Sumaira Foundation</p><p>Website - <a target="_blank" rel="noopener noreferrer nofollow" href="http://www.sumairafoundation.org">www.sumairafoundation.org</a></p><p>Facebook - <a target="_blank" rel="noopener noreferrer nofollow" href="http://www.facebook.com/TheSumairaFoundation">www.facebook.com/TheSumairaFoundation</a></p><p>Voices of NMO & MOG - <a target="_blank" rel="noopener noreferrer nofollow" href="http://www.sumairafoundation.org/awareness/voices-of-nmo/">www.sumairafoundation.org/awareness/voices-of-nmo/</a></p><p></p><p><strong>TIMESTAMPS/TOPICS:</strong></p><p>00:01:27 Alanna Yee</p><p>00:08:08 How To Start Sharing Our Experiences</p><p>00:11:45 More Than Words, Other Ways To Tell Our Stories</p><p>00:16:11 Facts & Emotions</p><p>00:23:53 Authenticity And Privacy</p><p>00:29:41 Advice For People Considering Sharing Their Health Stories</p><p></p><p><strong>ADDITIONAL LINKS</strong></p><p><em>The profoundly personal side of rare disease: Humanizing the therapeutic journey of patients</em> from Science Magazine, a peer-reviewed academic journal by the American Association for the Advancement of Science. <a target="_blank" rel="noopener noreferrer nofollow" href="http://t.ly/Llg1U">t.ly/Llg1U</a></p><p></p><p><strong>SUPPORT THE PODCAST</strong></p><p><a target="_blank" rel="noopener noreferrer nofollow" href="https://www.sumairafoundation.org/advocacy/donate/">Donate to Illuminate</a></p><p><a target="_blank" rel="noopener noreferrer nofollow" href="https://www.sumairafoundation.org/advocacy/donate/">https://www.sumairafoundation.org/advocacy/donate/</a></p><p></p><p><strong>CREDITS:</strong></p><p>Producer & Host - <a target="_blank" rel="noopener noreferrer nofollow" href="mailto:brian@sumairafoundation.org">Brian Dawson</a></p><p>Music - Denys Kyshchuk from Pixabay</p>
36 total episodes available
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