Episoder

  • 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

  • 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

  • Manglende episoder?

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  • 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

  • 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

  • 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

  • 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

  • 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

  • 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

  • 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

  • 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

  • In the second part of our series on working with NMO and MOG, we are joined by Dr. Farrah Mateen. This year she published work that focuses on the socioeconomic impact of NMOSD on patients and caregivers. The work of Dr. Mateen and her team provides us with one of the most in-depth looks at the psychosocial toll, risks, unmet needs, and opportunity loss due to NMOSD.

    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

    Connect With UsWebsite - https://www.sumairafoundation.org

    Facebook - https://www.facebook.com/TheSumairaFoundation

    Instagram - https://www.instagram.com/demystifying_nmomog

    Twitter - https://twitter.com/DemystifyingNMO

    TIMESTAMPS/TOPICS:

    00:01:15 Dr. Farrah Mateen

    00:03:29 Impact of NMOSD on Employment

    00:05:53 What We Can Learn From This Research

    00:07:48 Barriers to Employment

    00:10:45 Burden of Treatment

    00:15:38 Time to Diagnosis

    00:21:17 Age of Onset and Future Opportunities

    00:24:48 The Role of Mental Health on Returning to Work

    00:29:32 Unmet Needs

    00:38:36 Disclosing Illness

    00:41:11 Comparing NMOSD's Impact

    00:44:49 Impact on Caregivers

    02:34:00 Future of this Research

    LINKS:

    Mateen FJ, Trápaga Hacker CM. Understanding the employment impact of neuromyelitis optica spectrum disorder in the USA: Mixed methods. Front Neurol. 2023 Mar 9;14:1142640. doi: 10.3389/fneur.2023.1142640. PMID: 36970509; PMCID: PMC10033531. https://www.frontiersin.org/articles/10.3389/fneur.2023.1142640/full

    Trapaga Hacker CM, Hjerthen IG, Shirkoohi A, et al. Impact of NMOSD on employment: a global survey. Presented at: 2023 ACTRIMS Forum; February 23-25; San Diego, CA. Abstract P320. https://www.frontiersin.org/articles/10.3389/fneur.2023.1142640/full

    CREDITS:

    Producer & Host - Brian Dawson

    Guest Photo - Mass General Hospital

    Music - Denys Kyshchuk from Pixabay

  • Many people will recognize this episode’s guest as “Nell’s mom.” But today, we are focusing on the journey of Dr. Maggie Kang, whose world was shaken to its core when her daughter was diagnosed with NMOSD. Bogged down by the stress and the uncertainty of the future, she consulted a coach. Maggie soon realized she was the barrier to moving forward. The results were so profound she became a certified life coach focused on supporting the rare disease community, especially moms.Last year she shared her experiences at TEDxCherryCreekWomen, and she is here today to continue that conversation about how those early days impacted her family and, ultimately, what she learned that could help us all work through pain and suffering.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:Maggie KangWebsite - https://maggiekangmd.comVoices of NMO - www.sumairafoundation.org/maggies_nmo_story_finding_miraclesTEDxCherryCreekWomen - https://youtu.be/Dgr_Ng9Dt6cConnect With UsWebsite - https://www.sumairafoundation.orgFacebook - https://www.facebook.com/TheSumairaFoundationInstagram - https://www.instagram.com/demystifying_nmomogTwitter - https://twitter.com/DemystifyingNMOTIMESTAMPS/TOPICS:00:00:59 Dr. Maggie Kang00:02:16 Nell's Story00:07:35 Changes in Family Dynamics00:10:11 Balancing Mom vs. Doctor00:11:58 Realizing You Need Help00:17:19 Not Everyday Will Be Rosy00:18:35 How Life Coaching Can Help00:20:48 Working Through Pain00:21:55 Writing Your Narrative00:26:04 The Ripple Effect of Finding Joy00:28:57 Responding With Pain and Suffering00:31:10 Mom GuiltLINKS:My Hospital Story by Nell Choi - https://www.amazon.com/My-Hospital-Story-Nell-Choi/dp/1982262842CREDITS:Producer & Host - Brian DawsonGuest Photo - Maggie KangMusic - Denys Kyshchuk from Pixabay

  • In this episode, we are joined by Anessa Powell to discuss the many challenges that people with chronic illnesses face in the workplace, from disclosing their illnesses to finding opportunities and navigating professional relationships.Following her Addison’s Disease (Primary Adrenal Insufficiency) diagnosis, she focused on raising awareness that disabilities come in many forms. Her outreach efforts led Anessa and her husband, Bill, to create AllAbility Recruiting, where they strive to Leave No Ability Behind through disability employment, training, and consulting.

    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:

    Anessa Powell

    Website - https://allabilityrecruiting.com

    LinkedIn - https://www.linkedin.com/in/anessa-powell/

    Demystifying NMO & MOG 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:

    00:00:49 Anessa Powell

    00:10:45 Finding Opportunities

    00:13:21 To Disclose or Not To Disclose

    00:16:02 ADA, Protection for Employees & Employers

    00:21:04 Accommodations

    00:23:09 Managing Co-worker Relationships

    00:28:54 Return to the Office

    00:31:08 Post-COVID Work Etiquette

    00:32:37 Breaking down Misconceptions and Barriers

    00:38:10 How Organizations Can Access Untapped Potential

    00:40:33 Young Adults and Entering the Workforce

    CREDITS:

    Producer & Host - Brian Dawson

    Cover Art - Sumaira Ahmed

    Guest Photo - Courtesy of AllAbility Recruiting

  • In this episode, we are joined by professional service dog trainer Leslie Horton to talk about all things service dogs, including what they are, legal protections, and training. We try to clear up some common misconceptions and touch on how they differ from emotional support animals, behavior standards in public, and being a “Certified” service dog.

    She owns Most Fine Canine in Frederick, Maryland, where she has spent over 20 years training and specializing in service dogs. She is certified as a dog trainer and service dog trainer and was inducted into the International Association of Canine Professionals (IACP) Hall of Fame.

    Leslie is also an R.N. and the Coordinator of Inova Fairfax Hospital’s Animal Assisted Care (AAC) program overseeing teams of handlers and dogs at the health system's four facilities.

    Leslie's experiences as a dog trainer, medical professional, and patient give her incredible insight on a topic where there is a lot of confusion and can be pretty emotional for people.

    ABOUT US:

    The Demystifying NMO and MOG podcast is a Sumaira Foundation (TSF) project and was made possible with the generous support of Genentech.

    STAY CONNECTED:

    Leslie Horton, IACP CDT, CDTA, PDTI, CSDT

    Website - https://www.mostfinecanine.net

    Facebook - https://www.facebook.com/HortonLeslieL

    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:

    00:00:58 Leslie Horton

    00:02:14 Service Dogs Vs. Emotional Support Animals

    00:02:58 Where Can Service Dogs Go?

    00:07:06 What Can A Business Ask?

    00:08:32 "Certification"

    00:08:51 Standards Of Behavior

    00:10:55 Fake Service Dogs

    00:18:24 What Is The Process Of Getting A Service Dog?

    00:26:57 Training A Service Dog

    LINKS:

    ADA Requirements: Service Animals https://www.ada.gov/resources/service-animals-2010-requirements/

    ADA Service Animal FAQ

    https://www.ada.gov/resources/service-animals-faqs/

    IACP - Service Dogs Overview https://www.canineprofessionals.com/service-dogs-overview

    IACP - Business Resources Regarding Service Dogs https://www.canineprofessionals.com/business-resources-regarding-service-dogs

    CREDITS:

    Executive Producer -

    Host - Brian Dawson

    Music - Denys Kyshchuk from Pixabay

  • In this episode, Brian talks with Dr. Amy Sullivan about resilience and how chronic illness impacts mental health.

    In her role as an Associate Professor of Medicine and, the Director of Behavioral Medicine & Research at the Mellen Center for MS, Director of the Neurological Institute Engagement and Wellbeing, Dr. Sullivan works with patients and families dealing with the impact of illness. She has also become a leading voice in physician and caregiver self-care, burnout, and psychological health and spearheaded Mellen Center's efforts that led to the National Psychologically Healthy Workplace Award, Best Practice by the American Psychological Association.

    ABOUT US:

    The Demystifying NMO and MOG podcast is a project of the Sumaira Foundation (TSF) and was made possible with the generous support of Genentech.

    STAY CONNECTED:

    Amy Sullivan, PsyD, ABPP

    Website - https://my.clevelandclinic.org/staff/13526-amy-sullivan

    Twitter - https://twitter.com/DrAmyBSullivan

    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:

    00:01:25 Dr. Amy Sullivan

    00:01:49 What is Resilience?

    00:03:52 Where Does Resilience Come From?

    00:10:21 Resilience Fatigue

    00:12:23 The Grieving Process in Chronic Illness

    00:15:00 How to Center Yourself

    00:16:33 Wellness

    00:18:47 Motivation

    00:19:56 Asking for Help

    00:20:27 Caring for Caregivers & Breaking Down Stigmas

    CREDITS:

    Host - Brian Dawson

    Music - Denys Kyshchuk from Pixabay

    Guest Photo - Cleveland Clinic

  • In today’s episode, we welcome an award-winning physician, researcher, and educator, Dr. Aaron Boster. He is a board-certified Neurologist and the founder and President of the Boster Center for Multiple Sclerosis in Columbus, Ohio.

    We had the pleasure of catching up with Dr. Boster to talk about harnessing the power of social media to provide 24-7 access to information reliable, understandable medical information. He also breaks down the importance of clinical trials and walks us through each phase of a study and what a participant can expect.

    ABOUT US:

    The Demystifying NMO and MOG podcast is a project of the Sumaira Foundation (TSF) and was made possible with the generous support of Genentech.

    STAY CONNECTED:

    Aaron Boster, M.D.

    Website - https://bosterms.com

    Youtube - https://www.youtube.com/c/AaronBosterMD

    Twitter - https://twitter.com/AaronBosterMD

    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

    The Connor B Judge Foundation

    Website - https://www.connorbjudgefoundation.org

    Facebook - https://www.facebook.com/cbjvnmo

    TIMESTAMPS/TOPICS:

    00:00:21 Dr. Aaron Boster

    00:01:54 Social Media for Patient Education

    00:03:39 Being an Active Participant in Your Care

    00:04:05 Shared Clinical Decision Making

    00:05:21 Better Communication

    00:07:21 Permission To Be Selfish

    00:10:48 YouTube

    00:11:29 Clinical Trials

    00:12:25 The Importance of Being Part of Clinical Trials

    00:13:34 The Phases of a Clinical Trial

    00:21:00 Finding Clinical Trials

    00:26:39 A Paradigm Shift

    00:29:48Killing Old Myths

    LINKS:

    Dr. Noster’s Multiple Sclerosis Clinical Research YouTube Playlist

    https://youtube.com/playlist?list=PL3a4GpjWLtCiSkGgtl4UlnFFnk1Fhevkt

    CREDITS:

    Host - Chelsey Judge

    Editor - Brian Dawson

    Music - Denys Kyshchuk from Pixabay

    Guest Photo - Boster Center for Multiple Sclerosis

  • Brian spent more than twenty years working in emergency management as a paramedic & law enforcement officer before getting a Master’s degree in Library & Information Science. While serving as the Acting Deputy Secretary of Education for Libraries with the Pennsylvania Department of Education, a cold triggered an autoimmune response leaving him blind & paralyzed from the chest down.

    Following an NMO diagnosis, he needed to understand more about the disease. As an information professional, he was shocked that much of the information he got from his care team or found online was outdated, not supported by science, or just plain wrong.

    After eighteen months of relapses & research, a consultation with an NMO specialist led to a diagnosis of MOGAD & the proper treatment that gave him his life back.

    Brian & Chelsey talk about how critical it is to find reliable, scientifically based information to make the best decisions about your health.

    ABOUT US:

    Demystifying NMO & MOG is a Sumaira Foundation (TSF) project & made possible with the generous support of Genentech.

    STAY CONNECTED:

    Brian Dawson

    Twitter twitter.com/bkdawson1313

    Website www.sumairafoundation.org/brians-mog-story-life-goes-on

    LinkedIn www.linkedin.com/in/briankdawson

    Demystifying NMO podcast

    Instagram www.instagram.com/demystifying_nmomog

    Twitter twitter.com/DemystifyingNMO

    The Sumaira Foundation

    Website www.sumairafoundation.org

    TIMESTAMPS:

    00:01:17 Health Literacy?

    00:04:02 Why is it so Important?

    00:08:58 Impact on Health Outcomes

    00:15:16 Important Questions to Ask

    00:17:20 Provider Responsibility

    00:20:36 Good vs. Bad Information

    00:23:36 Science Evolves

    00:26:08 Finding Good Information

    LINKS:

    Find your Local Library www.careeronestop.org/LocalHelp/CommunityServices/find-libraries.aspx

    TSF NMO Resources www.sumairafoundation.org/nmosd-resources

    TSF MOGAD Resources www.sumairafoundation.org/mogad-resources

    National Library of Medicine www.nlm.nih.gov/portals/public.html

    PubMed Database https://pubmed.ncbi.nlm.nih.gov/

    Medline Plus https://medlineplus.gov

    CREDITS:

    Host -Chelsey Judge

    Producer - Brian Dawson

    Music - Denys Kyshchuk from Pixabay

  • Season three starts with big news about the podcast. We talk with Sumaira Ahmed of The Sumaira Foundation about the podcast's growth and inclusivity and introduce a new co-host, Brian Dawson.

    Then we were joined by one of the leading NMO and MOG researchers, Michael Levy, MD, Ph.D. Dr. Levy is the Research Director of the Division of Neuroimmunology & Neuroinfectious Disease at Massachusetts General Hospital and is an Associate Professor at Harvard Medical School.

    ABOUT US:

    The Demystifying NMO and MOG podcast is a project of the Sumaira Foundation (TSF) and was made possible with the generous support of Genentech.

    STAY CONNECTED:

    Michael Levy, MD, Ph.D

    Twitter - https://twitter.com/mlevy18

    Website - https://doctors.massgeneralbrigham.org/provider/Michael+Levy/1090088

    Demystifying NMO and MOG Podcast

    Instagram - https://www.instagram.com/demystifying_nmomog

    Twitter - https://twitter.com/DemystifyingNMO

    Website - https://www.sumairafoundation.org/awareness/demystifying-nmo/

    The Sumaira Foundation

    Website - https://www.sumairafoundation.org

    Facebook - https://www.facebook.com/TheSumairaFoundation

    TIMESTAMPS:

    00:00:00 Launching Season 3 with Big News

    00:01:00 The Merger

    00:01:48 NMO & MOG, All In It Together

    00:04:08 New Co-Host

    00:05:26 A Preview of Season 3

    00:07:00 Michael Levy, MD, Ph.D.

    00:08:05 From MS to NMO, to MOG.

    00:09:54 NMO & MOG Overlaps

    00:11:47 Different Mechanisms, Similiar Outcomes

    00:13:05 Diagnostic Differences

    00:14:28 MOG ~vs~ MS

    00:17:22 Longterm Outcomes

    00:19:30 Being Misdiagnosed

    00:21:22 Treatment Overlaps

    00:24:44The Future of MOG & Clinical Trials

    LINKS:

    NMOSD Resources - https://www.sumairafoundation.org/nmosd-resources/

    MOGAD Resources - https://www.sumairafoundation.org/mogad-resources/

    CREDITS:

    Host - Chelsey Judge

    Producer & Co-Host - Brian Dawson

    Music - Music by Denys Kyshchuk from Pixabay

    Guest Photo - The Sumaira Foundation

  • In the season finale of season 2, Chelsey reviews the topics covered and seeks feedback from listeners for season 3!

    To top off season 2, Demystifying NMO features Nell Choi, who shares her powerful and inspiring NMO story and optimistic perspective. Nell is a 13 year old accomplished NMOSD patient advocate. She is a published author of 'My Hospital Story', aiming to foster connection with others going through similar traumatic health journeys. She has also brought national awareness of NMO by appearing on CBS evening news to share her story. Recently, she met with President Joe Biden and First Lady Jill Biden, presenting them with a copy of her book.

    In a candid chat with Chelsey, Nell shares:

    At 9 years old, Nell faced the mysterious and confusing onset of NMO, hospitals and the overall healthcare system. Of note, pediatric cases makes up about 3-5% of NMOSD.

    Nell coped through journaling and finding gratitude for her parents and the gifts she would find through her journey, including finding connection in the NMO community, as well as herself and core values through the adversity.

    Her authorship of 'My Hospital Story' taught her the importance of connection with others, and that we all have the power to make an impact.

    Nell's hopes for the future of the NMO community include finding a cure and making sure all impacted by NMO are able to share their story to become more connected.

    To learn more about pediatric NMO, here is a scientific journal mentioned in this episode: https://www.frontiersin.org/articles/10.3389/fped.2020.00339/full

  • Part 2 of our conversation on the NMOSD diagnosis, we discuss the personal 'what now?' element...On the individual level, what does coping and living with a newly obtained NMOSD diagnosis look like? What can you do about it? To answer these questions, Demystifying NMO is delighted to have guest Taylor Ann Macey on the pod to discuss her personal patient experience with her NMOSD diagnosis.

    Taylor is a wife, mother, Brigham Young University graduate and life coach, with an educational background in fitness and nutrition, Taylor is candid about her NMOSD diagnosis story:

    What her journey to the NMOSD diagnosis looked like

    How she coped with her new life post NMOSD diagnosis

    Controlling what you can by implementing an integrative approach to NMOSD:

    Building a trusted clinical care team that incorporates acute relapse management with preventative treatment based on shared decisions

    Movement! Being mindful and respectful of your body's capabilities and limits, while moving/exercising as you can to show your body love and improve outcome

    Good, well-balanced nutrition

    Focusing on your mental and emotional health! Going inward to process difficult life events like an NMOSD diagnosis is critical, and finding a trusted therapist can be impactful and helpful.

    Approaches to identifying all the misinformation on the internet!