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 andwas made possible with the generous support of Genentech.SOCIAL & WEBSITE:Brian KosczukLinkedIn - https://tinyurl.com/2he45j6nDemystifying NMO podcastInstagram - www.instagram.com/demystifying_nmomogTwitter - twitter.com/DemystifyingNMOThe Sumaira FoundationWebsite - www.sumairafoundation.orgFacebook - www.facebook.com/TheSumairaFoundationVoices of NMO & MOG - www.sumairafoundation.org/awareness/voices-of-nmo/ADDITIONAL LINKSPreparing for Disaster for People with Disabilities and Other Special Needs(FEMA and the American Red Cross)https://tinyurl.com/ycjpxga2People with Disabilities (U.S. Dept. of Homeland Security) https://www.ready.gov/disabilityDisability and Health Emergency Preparedness (CDC)https://tinyurl.com/yg73h3uuSUPPORT THE PODCASTDonate to Illuminatehttps://www.sumairafoundation.org/advocacy/donate/CREDITS:Producer & Host - Brian DawsonMusic - Denys Kyshchuk from Pixabay
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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 andwas made possible with the generous support of Genentech.SOCIAL & WEBSITE:Dr. Gretchen HawleyWebsite - www.drgretchenhawley.comFacebook - www.facebook.com/DrGretchenPTInstagram - www.instagram.com/doctor.gretchenTwitter - x.com/DrGretchenPTYoutube - www.youtube.com/c/DoctorGretchenHawleyDemystifying NMO podcastInstagram - www.instagram.com/demystifying_nmomogTwitter - twitter.com/DemystifyingNMOThe Sumaira FoundationWebsite - www.sumairafoundation.orgFacebook - www.facebook.com/TheSumairaFoundationVoices of NMO & MOG - www.sumairafoundation.org/awareness/voices-of-nmo/TIMESTAMPS/TOPICS:00:01:02 Dr. Gretchen00:08:39 Neurplasticity00:16:07 Rehab vs. Maintenance00:20:05 Getting Started00:23:27 PT for Better Quality of Life00:25:59 Functional Exercise00:29:33 Modifications Can Lead to Success00:33:13 Heat Intolerance 00:35:28 Rest is Crucial00:42:30Finding a PTADDITIONAL LINKS:The MSing Link book - www.drgretchenhawley.com/the-msing-link-bookSUPPORT THE PODCASTDonate to Illuminatehttps://www.sumairafoundation.org/advocacy/donate/CREDITS:Producer & Host - Brian DawsonMusic - Denys Kyshchuk from Pixabay
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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 YeeFacebook - https://www.facebook.com/wherearemypillowsInstagram - www.instagram.com/wherearemypillowsTwitter - twitter.com/wampillowsDemystifying NMO podcastInstagram - www.instagram.com/demystifying_nmomogTwitter - twitter.com/DemystifyingNMOThe Sumaira FoundationWebsite - www.sumairafoundation.orgFacebook - www.facebook.com/TheSumairaFoundationVoices of NMO & MOG - www.sumairafoundation.org/awareness/voices-of-nmo/TIMESTAMPS/TOPICS:00:01:27 Alanna Yee00:08:08 How To Start Sharing Our Experiences00:11:45 More Than Words, Other Ways To Tell Our Stories00:16:11 Facts & Emotions00:23:53 Authenticity And Privacy00:29:41 Advice For People Considering Sharing Their Health StoriesADDITIONAL LINKSThe 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/Llg1USUPPORT THE PODCASTDonate to Illuminatehttps://www.sumairafoundation.org/advocacy/donate/CREDITS:Producer & Host - Brian DawsonMusic - Denys Kyshchuk from Pixabay
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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 andwas made possible with the generous support of Genentech.SOCIAL & WEBSITE:RoselyneInstagram - https://www.instagram.com/roselyne_trainsDemystifying NMO podcastInstagram - https://www.instagram.com/demystifying_nmomogTwitter - https://twitter.com/DemystifyingNMOThe Sumaira FoundationWebsite - https://www.sumairafoundation.orgFacebook - https://www.facebook.com/TheSumairaFoundationTIMESTAMPS/TOPICS:00:01:00 Roselyne00:01:28 The Path to Being a Physician00:04:29 Educating Others00:06:14 Guilt and Obligation00:10:03 Self-care in a Demanding Profession00:14:48 Managing a Career with NMO00:17:23 Improving Clinician - Patient Relationships00:25:33 Learning to Accept IllnessSUPPORT THE PODCASTDonate to Illuminatehttps://www.sumairafoundation.org/advocacy/donate/CREDITS:Producer & Host - Brian DawsonMusic - Denys Kyshchuk from Pixabay
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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 andwas made possible with the generous support of Genentech.SOCIAL & WEBSITE:Marie AbregoWebsite - t.ly/ndARITwitter - https://twitter.com/nmo_marieAnneMarie NawrockiWebsite - t.ly/RN2TDLinkedIn - www.linkedin.com/in/annemarie-nawrocki-5426b7120/Demystifying NMO podcastInstagram - https://www.instagram.com/demystifying_nmomogTwitter - https://twitter.com/DemystifyingNMOThe Sumaira FoundationWebsite - https://www.sumairafoundation.orgFacebook - https://www.facebook.com/TheSumairaFoundationTIMESTAMP:00:01:03 Marie Abrego00:04:06 Marie & Bambi00:20:42 AnneMarie Nawrocki00:23:37 Pets & Wellbeing00:27:13 Physical benefits00:35:57 Loss of a Pet00:39:29 Coping with the Inevitable00:42:03 Supporting a Grieving Pet OwnerSUPPORT THE PODCAST:Donate to Illuminatehttps://www.sumairafoundation.org/advocacy/donate/CREDITS:Producer & Host - Brian DawsonMusic - Denys Kyshchuk from Pixabay
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.
Ireland