• Episode #36 | When Disaster Strikes: Emergency Planning for People with Disabilities
    Jul 3 2024

    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

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    37 mins
  • Episode #35 | Movement as Medicine w/ Dr. Gretchen
    Jun 19 2024

    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

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    49 mins
  • Episode #34 | From Brain Fog to Clarity: Finding Voice and Purpose w/ Alanna Yee
    May 29 2024

    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

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    33 mins
  • Episode #33 | From Patient to Practitioner w/ Roselyne
    May 9 2024

    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

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    29 mins
  • Episode #32 | Beyond Words: The Silent Support of Animal Companions
    Apr 11 2024

    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

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    47 mins
  • Episode #31 | EUPATI Education in Action: Leda's Path to Patient Advocacy
    Mar 13 2024

    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

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    40 mins
  • Episode #30 | Navigating NMO in Challenging Circumstances: Global Inequities in Care
    Feb 21 2024

    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

    Show More Show Less
    55 mins
  • Episode #29 | Caregivers: Nobody Fights Alone
    Jan 29 2024

    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

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    38 mins