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.
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 (https://tinyurl.com/2he45j6n)
Demystifying NMO podcast
Instagram - www.instagram.com/demystifying_nmomog (http://www.instagram.com/demystifying_nmomog)
Twitter - twitter.com/DemystifyingNMO (http://twitter.com/DemystifyingNMO)
The Sumaira Foundation
Website - www.sumairafoundation.org (http://www.sumairafoundation.org)
Facebook - www.facebook.com/TheSumairaFoundation (http://www.facebook.com/TheSumairaFoundation)
Voices of NMO & MOG - www.sumairafoundation.org/awareness/voices-of-nmo/ (http://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 (https://tinyurl.com/ycjpxga2)
People with Disabilities (U.S. Dept. of Homeland Security) https://www.ready.gov/disability (https://www.ready.gov/disability)
Disability and Health Emergency Preparedness (CDC)
https://tinyurl.com/yg73h3uu (https://tinyurl.com/yg73h3uu)
SUPPORT THE PODCAST
Donate to Illuminate (https://www.sumairafoundation.org/advocacy/donate/)
https://www.sumairafoundation.org/advocacy/donate/ (https://www.sumairafoundation.org/advocacy/donate/)
CREDITS:
Producer & Host - Brian Dawson (mailto:brian@sumairafoundation.org)
Music - Denys Kyshchuk from Pixabay
19 Jun 2024
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 (http://www.drgretchenhawley.com)
Facebook - www.facebook.com/DrGretchenPT (http://www.facebook.com/DrGretchenPT)
Instagram - www.instagram.com/doctor.gretchen (http://www.instagram.com/doctor.gretchen)
Twitter - x.com/DrGretchenPT (http://x.com/DrGretchenPT)
Youtube - www.youtube.com/c/DoctorGretchenHawley (http://www.youtube.com/c/DoctorGretchenHawley)
Demystifying NMO podcast
Instagram - www.instagram.com/demystifying_nmomog (http://www.instagram.com/demystifying_nmomog)
Twitter - twitter.com/DemystifyingNMO (http://twitter.com/DemystifyingNMO)
The Sumaira Foundation
Website - www.sumairafoundation.org (http://www.sumairafoundation.org)
Facebook - www.facebook.com/TheSumairaFoundation (http://www.facebook.com/TheSumairaFoundation)
Voices of NMO & MOG - www.sumairafoundation.org/awareness/voices-of-nmo/ (http://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 (http://www.drgretchenhawley.com/the-msing-link-book)
SUPPORT THE PODCAST
Donate to Illuminate
https://www.sumairafoundation.org/advocacy/donate/ (https://www.sumairafoundation.org/advocacy/donate/)
CREDITS:
Producer & Host - Brian Dawson (mailto:brian@sumairafoundation.org)
Music - Denys Kyshchuk from Pixabay
29 May 2024
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 (https://www.facebook.com/wherearemypillows)
Instagram - www.instagram.com/wherearemypillows (http://www.instagram.com/wherearemypillows)
Twitter - twitter.com/wampillows (http://twitter.com/wampillows)
Demystifying NMO podcast
Instagram - www.instagram.com/demystifying_nmomog (http://www.instagram.com/demystifying_nmomog)
Twitter - twitter.com/DemystifyingNMO (http://twitter.com/DemystifyingNMO)
The Sumaira Foundation
Website - www.sumairafoundation.org (http://www.sumairafoundation.org)
Facebook - www.facebook.com/TheSumairaFoundation (http://www.facebook.com/TheSumairaFoundation)
Voices of NMO & MOG - www.sumairafoundation.org/awareness/voices-of-nmo/ (http://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 (http://t.ly/Llg1U)
SUPPORT THE PODCAST
Donate to Illuminate (https://www.sumairafoundation.org/advocacy/donate/)
https://www.sumairafoundation.org/advocacy/donate/ (https://www.sumairafoundation.org/advocacy/donate/)
CREDITS:
Producer & Host - Brian Dawson (mailto:brian@sumairafoundation.org)
Music - Denys Kyshchuk from Pixabay
Reach and audience
Public platform figures. Ratings count people who left a rating, not total listeners.
Apple Podcasts (US)
5.0 / 5
23 ratings
Spotify
5.0 / 5
2 ratings
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