Demystifying NMO

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

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

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

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

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/TheSumairaFoundationSUPPORT the PodcastDonate to Illuminatehttps://www.sumairafoundation.org/advocacy/donate/CREDITS:Producer & Host - Brian DawsonMusic - Denys Kyshchuk from Pixabay

Episode #31 | EUPATI Education in Action: Leda's Path to Patient AdvocacyIn 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 andwas made possible with the generous support of Genentech.SOCIAL & WEBSITE:Leda BresnovWebsite - https://www.sumairafoundation.org/ledas-nmo-story-i-want-to-live-while-i-live/Instagram - https://www.instagram.com/bresnov/Twitter -https://twitter.com/BresnovDemystifying NMO podcastInstagram - https://www.instagram.com/demystifying_nmomogTwitter - https://twitter.com/DemystifyingNMOThe Sumaira FoundationWebsite - https://www.sumairafoundation.orgFacebook - https://www.facebook.com/TheSumairaFoundationTIMESTAMPS/TOPICS:00:01:14 Leda Bresnov00:04:36 EUPATI Patient Expert Training Programme00:07:21 Patient Expert Training Programme00:11:02 Patient Input and Drug Development00:23:39 Self-Advocacy & Involvement in Healthcare Decision-MakingLINKS: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.pdfSUPPORT the PodcastDonate to Illuminatehttps://www.sumairafoundation.org/advocacy/donate/CREDITS:Producer & Host - Brian DawsonMusic - 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 Matten.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 andwas made possible with the generous support of Genentech.SOCIAL & WEBSITE:Farrah Mateen, MD, PhDWebsite - https://doctors.massgeneralbrigham.org/provider/Farrah+J+Mateen/255866Global Neurology Research Group - www.massgeneral.org/neurology/research/global-neurology-research-groupTwitter - https://twitter.com/FarrahMateenThe Sumaira FoundationWebsite - www.sumairafoundation.orgFacebook - www.facebook.com/TheSumairaFoundationLINKS: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 PodcastDonate to Illuminatehttps://www.sumairafoundation.org/advocacy/donate/CREDITS:Producer & Host - Brian DawsonMusic - 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 andwas made possible with the generous support of Genentech.SOCIAL & WEBSITE:Candice's Storyhttps://www.sumairafoundation.org/bellas-nmo-story-in-this-family-we-fight-together/Demystifying NMO podcastInstagram - https://www.instagram.com/demystifying_nmomogTwitter - https://twitter.com/DemystifyingNMOThe Sumaira FoundationWebsite - https://www.sumairafoundation.orgFacebook - https://www.facebook.com/TheSumairaFoundationTIMESTAMPS/TOPICS:00:01:34 Candice's Story00:11:28 Becoming an Advocate00:14:42 Explaining NMO to a 9-year-old00:17:57 Medical Marijuana00:22:10 TSF's Human Collective ProjectLINKS:Human Collective Project (HCP) Support Group Meetingshttps://www.sumairafoundation.org/community/human-collective-project-2/SUPPORT the PodcastDonate to Illuminatehttps://www.sumairafoundation.org/advocacy/donate/CREDITS:Producer & Host - Brian DawsonMusic - 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 andwas made possible with the generous support of Genentech.SOCIAL & WEBSITE:Amy Niles & The PAN FoundationWebsite - https://www.panfoundation.orgFacebook - https://www.facebook.com/PANFoundationInstagram - https://www.instagram.com/pan.foundationTwitter - https://twitter.com/pan_foundationConnect With UsWebsite - https://www.sumairafoundation.orgFacebook - https://www.facebook.com/TheSumairaFoundationInstagram - https://www.instagram.com/demystifying_nmomogTwitter - https://twitter.com/DemystifyingNMOTIMESTAMPS00:02:02 Amy Niles & The Pan Foundation00:04:16 A Day in the Life00:05:54 Serving the NMO Comunity00:06:29 Eligibility Criteria00:09:03 The Application Process00:11:30 The Fund Finder00:14:58 Medicare Updates00:20:37 Copay Accumulators00:24:49 Alternative Funding Programs00:30:54 Do You Have a Copay Accumaltor?00:32:32 Legislation to Protect Patients & What You Can DoLINKS:Fund Finder - https://www.panfoundation.org/find-disease-fundFind help with FundFinder - https://www.panfoundation.org/fundfinderNeuromyelitis Optica Spectrum Disorder - PAN Foundation - https://www.panfoundation.org/disease-funds/neuromyelitis-optica-spectrum-disorderEverything you need to know about Medicare reforms - PAN Foundation - https://www.panfoundation.org/everything-you-need-to-know-about-medicare-reformsAsk your elected officials to support The HELP Copays Act and ban copay accumulator programs - https://www.panfoundation.org/end-copay-accumulatorsCREDITS:Producer & Host - Brian DawsonGuest Photo - The PAN FoundationMusic - Denys Kyshchuk from Pixabay

Episode 27 | Double Seronegative NMOIn 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 MariottoTwitter - https://twitter.com/SaraMariottoMDSumaira AhmedLinkedin - https://www.linkedin.com/in/sumairaahmed/Twitter - https://twitter.com/SumairaFlowerConnect With UsWebsite - https://www.sumairafoundation.orgFacebook - https://www.facebook.com/TheSumairaFoundationInstagram - https://www.instagram.com/demystifying_nmomogTwitter - https://twitter.com/DemystifyingNMOTIMESTAMPS/TOPICS:00:01:30 Nicole Helton, Patient Experience00:06:30 Self-doubt00:08:14 Accessing Treatment00:15:03 Dr. Sara Mariotto00:15:22 Defining Double Seronegative NMO00:21:42 Treatment00:25:05 Diagnostic Guidelines00:32:51 Research00:37:27 Finding a Doctor and Resources00:39:48 Sumaira Ahmed00:42:04 Barriers to Care00:43:10 Building Resources00:47:03 Advocating for Double Seronegative NMO00:50:39 Closing with Nicole HeltonLINKS:Double seronegative NMOSD with Dr. EoinFlanagan -https://youtu.be/pdYMQImBHp0Double Seronegative NMOSD Facebook Group -https://www.facebook.com/groups/6274134689359958CREDITS:Producer & Host - Brian DawsonMusic - 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, PhDWebsite - https://doctors.massgeneralbrigham.org/provider/Farrah+J+Mateen/255866Global Neurology Research Group - www.massgeneral.org/neurology/research/global-neurology-research-groupTwitter - https://twitter.com/FarrahMateenConnect With UsWebsite - https://www.sumairafoundation.orgFacebook - https://www.facebook.com/TheSumairaFoundationInstagram - https://www.instagram.com/demystifying_nmomogTwitter - https://twitter.com/DemystifyingNMOTIMESTAMPS/TOPICS:00:01:15 Dr. Farrah Mateen00:03:29 Impact of NMOSD on Employment00:05:53 What We Can Learn From This Research00:07:48 Barriers to Employment00:10:45 Burden of Treatment00:15:38 Time to Diagnosis00:21:17 Age of Onset and Future Opportunities00:24:48 The Role of Mental Health on Returning to Work00:29:32 Unmet Needs00:38:36 Disclosing Illness00:41:11 Comparing NMOSD's Impact00:44:49 Impact on Caregivers02:34:00 Future of this ResearchLINKS: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/fullTrapaga 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/fullCREDITS:Producer & Host - Brian DawsonGuest Photo - Mass General HospitalMusic - 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 PowellWebsite - https://allabilityrecruiting.comLinkedIn - https://www.linkedin.com/in/anessa-powell/Demystifying NMO & MOG podcastInstagram - https://www.instagram.com/demystifying_nmomogTwitter - https://twitter.com/DemystifyingNMOThe Sumaira FoundationWebsite - https://www.sumairafoundation.orgFacebook - https://www.facebook.com/TheSumairaFoundationTIMESTAMPS/TOPICS:00:00:49 Anessa Powell00:10:45 Finding Opportunities00:13:21 To Disclose or Not To Disclose00:16:02 ADA, Protection for Employees & Employers00:21:04 Accommodations00:23:09 Managing Co-worker Relationships00:28:54 Return to the Office00:31:08 Post-COVID Work Etiquette00:32:37 Breaking down Misconceptions and Barriers00:38:10 How Organizations Can Access Untapped Potential00:40:33 Young Adults and Entering the WorkforceCREDITS:Producer & Host - Brian DawsonCover Art - Sumaira AhmedGuest 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, CSDTWebsite - https://www.mostfinecanine.netFacebook - https://www.facebook.com/HortonLeslieLDemystifying NMO podcastInstagram - https://www.instagram.com/demystifying_nmomogTwitter - https://twitter.com/DemystifyingNMOThe Sumaira FoundationWebsite - https://www.sumairafoundation.orgFacebook - https://www.facebook.com/TheSumairaFoundationTIMESTAMPS/TOPICS:00:00:58 Leslie Horton00:02:14 Service Dogs Vs. Emotional Support Animals00:02:58 Where Can Service Dogs Go?00:07:06 What Can A Business Ask?00:08:32 "Certification"00:08:51 Standards Of Behavior00:10:55 Fake Service Dogs00:18:24 What Is The Process Of Getting A Service Dog?00:26:57 Training A Service DogLINKS:ADA Requirements: Service Animals https://www.ada.gov/resources/service-animals-2010-requirements/ADA Service Animal FAQhttps://www.ada.gov/resources/service-animals-faqs/IACP - Service Dogs Overview https://www.canineprofessionals.com/service-dogs-overviewIACP - Business Resources Regarding Service Dogs https://www.canineprofessionals.com/business-resources-regarding-service-dogsCREDITS:Executive Producer -Host - Brian DawsonMusic - 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, ABPPWebsite - https://my.clevelandclinic.org/staff/13526-amy-sullivanTwitter - https://twitter.com/DrAmyBSullivanDemystifying NMO podcastInstagram - https://www.instagram.com/demystifying_nmomogTwitter - https://twitter.com/DemystifyingNMOThe Sumaira FoundationWebsite - https://www.sumairafoundation.orgFacebook - https://www.facebook.com/TheSumairaFoundationTIMESTAMPS/TOPICS:00:01:25 Dr. Amy Sullivan00:01:49 What is Resilience?00:03:52 Where Does Resilience Come From?00:10:21 Resilience Fatigue00:12:23 The Grieving Process in Chronic Illness00:15:00 How to Center Yourself00:16:33 Wellness00:18:47 Motivation00:19:56 Asking for Help00:20:27 Caring for Caregivers & Breaking Down StigmasCREDITS:Host - Brian DawsonMusic - Denys Kyshchuk from PixabayGuest 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.comYoutube - https://www.youtube.com/c/AaronBosterMDTwitter - https://twitter.com/AaronBosterMDDemystifying NMO podcastInstagram - https://www.instagram.com/demystifying_nmomogTwitter - https://twitter.com/DemystifyingNMOThe Sumaira FoundationWebsite - https://www.sumairafoundation.orgFacebook - https://www.facebook.com/TheSumairaFoundationThe Connor B Judge FoundationWebsite - https://www.connorbjudgefoundation.orgFacebook - https://www.facebook.com/cbjvnmoTIMESTAMPS/TOPICS:00:00:21 Dr. Aaron Boster00:01:54 Social Media for Patient Education00:03:39 Being an Active Participant in Your Care00:04:05 Shared Clinical Decision Making00:05:21 Better Communication00:07:21 Permission To Be Selfish00:10:48 YouTube00:11:29 Clinical Trials00:12:25 The Importance of Being Part of Clinical Trials00:13:34 The Phases of a Clinical Trial00:21:00 Finding Clinical Trials00:26:39 A Paradigm Shift00:29:48Killing Old MythsLINKS:Dr. Noster's Multiple Sclerosis Clinical Research YouTube Playlisthttps://youtube.com/playlist?list=PL3a4GpjWLtCiSkGgtl4UlnFFnk1FhevktCREDITS:Host - Chelsey JudgeEditor - Brian DawsonMusic - Denys Kyshchuk from PixabayGuest 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 DawsonTwitter twitter.com/bkdawson1313Website www.sumairafoundation.org/brians-mog-story-life-goes-onLinkedIn www.linkedin.com/in/briankdawsonDemystifying NMO podcastInstagram www.instagram.com/demystifying_nmomogTwitter twitter.com/DemystifyingNMOThe Sumaira FoundationWebsite www.sumairafoundation.orgTIMESTAMPS:00:01:17 Health Literacy?00:04:02 Why is it so Important?00:08:58 Impact on Health Outcomes00:15:16 Important Questions to Ask00:17:20 Provider Responsibility00:20:36 Good vs. Bad Information00:23:36 Science Evolves00:26:08 Finding Good InformationLINKS:Find your Local Library www.careeronestop.org/LocalHelp/CommunityServices/find-libraries.aspxTSF NMO Resources www.sumairafoundation.org/nmosd-resourcesTSF MOGAD Resources www.sumairafoundation.org/mogad-resourcesNational Library of Medicine www.nlm.nih.gov/portals/public.htmlPubMed Database https://pubmed.ncbi.nlm.nih.gov/Medline Plus https://medlineplus.govCREDITS:Host -Chelsey JudgeProducer - Brian DawsonMusic - 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.DTwitter - https://twitter.com/mlevy18Website - https://doctors.massgeneralbrigham.org/provider/Michael+Levy/1090088Demystifying NMO and MOG PodcastInstagram - https://www.instagram.com/demystifying_nmomogTwitter - https://twitter.com/DemystifyingNMOWebsite - https://www.sumairafoundation.org/awareness/demystifying-nmo/The Sumaira FoundationWebsite - https://www.sumairafoundation.orgFacebook - https://www.facebook.com/TheSumairaFoundationTIMESTAMPS:00:00:00 Launching Season 3 with Big News00:01:00 The Merger00:01:48 NMO & MOG, All In It Together00:04:08 New Co-Host00:05:26 A Preview of Season 300:07:00 Michael Levy, MD, Ph.D.00:08:05 From MS to NMO, to MOG.00:09:54 NMO & MOG Overlaps00:11:47 Different Mechanisms, Similiar Outcomes00:13:05 Diagnostic Differences00:14:28 MOG ~vs~ MS00:17:22 Longterm Outcomes00:19:30 Being Misdiagnosed00:21:22 Treatment Overlaps00:24:44The Future of MOG & Clinical TrialsLINKS:NMOSD Resources - https://www.sumairafoundation.org/nmosd-resources/MOGAD Resources - https://www.sumairafoundation.org/mogad-resources/CREDITS:Host - Chelsey JudgeProducer & Co-Host - Brian DawsonMusic - Music by Denys Kyshchuk from PixabayGuest Photo - The Sumaira Foundation

In the season finale of season 2, Chelsey reviews the topics covered and seeks out 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 is an accomplished NMOSD patient advocate. She is a published author of ' My Hosptial 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, and has 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 overall healthcare system. (Pediatric makes up about 3-5% of NMOSD cases).-Nell coped through journaling and finding gratitude for her parents and the 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 with NMO are able to share their story to become more connectedTo 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 likeHow she coped with her new life post NMOSD diagnosisControlling 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 decisionsMovement! Being mindful and respectful of your body's capabilities and limits, while moving/exercising as you can to show your body love and improve outcomeGood, well-balanced nutritionFocusing 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!

In this episode, host Chelsey chats with NMOSD patient and pediatric hematologist Dr. Joanna Robles about her unique perspective and experience obtaining her NMOSD diagnosis. In their discussion, they review:Important considerations for clinicians who make the NMOSD diagnosis and provide carOverview of the educational and training pathway for clinicians, including neurologistsReview of the International Diagnostic Criteria for NMOSD: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4515040/Highlight the importance of a swift and accurate NMOSD diagnosis for appropriate treatment and managementStay turned for a follow-up part 2 episode, in which Chelsey will chat with another NMOSD patient on 'After the NMOSD Diagnosis: Controlling What You Can.'

Embrace your inner nerd with host and CBJF scientific advisor Chelsey (PhD immunologist) as she reviews the emerging science and hot topics recently shared at the virtual European Committee for the Treatment and Research in MS (ECTRIMS). This is a major scientific meeting where clinicians and scientists in the field of central nervous system (CNS) diseases/disorders meet to share their recent data and findings with each other. Chelsey breaks down 4 buckets of NMOSD-related research topics: NMOSD- and MOG-associated disorders: overlaps and distinctions Unraveling complexities of NMOSDData updates on currently FDA-approved NMOSD treatmentsNeurodegeneration and demyelination in the CNS: Potential treatment targets in neuroregenerative processes

Feeling the heat this summer?! People living with NMOSD/MS can experience sensitivity to temperature, particularly extremely hot or cold temperatures. In this episode, Chelsey chats with TSF ambassadors Julie Aldridge and Alexis (aka Lexi) Marta about their experiences living with NMOSD and managing temperature sensitivity. They cover:Impact of heat on NMOSD symptoms aka Uhtoff's phenomenonHeat-related symptoms vs relapseManaging heat, especially on a hot summer dayWhere to find at-no-cost cooling vestsImpact of cold on symptoms and how to manage

In this episode, we focus on a rare population: men with NMO! NMO overwhelming affects women compared to men, and we wanted to tap into the male outlook and experiences living with NMO. Host Chelsey is joined by her brother, Connor Judge, a 28 year old man living with NMO to share his male perspectives:What's it like to be in a sea of women?How does NMO and treatments impact identity?What are the differences between the societal image of being a man vs being a man with NMO?Adapting to work and earning income before and after NMO?What's it like to date and talk about NMO to potential partners?How do you manage relationships with friends and family?

In this episode, host Chelsey gets candid on all things related to women's health and NMOSD with Sumaira Foundation Ambassador Chelsey Tucker (TN) and Dr. Tamara Kaplan, neurologist at Brigham and Women's Hospital and associate neurology professor with Harvard Medical School. Topics covered are body image and emotional well-being, NMO treatment impacts on sexual identity, effect of NMO on periods, fertility & family planning, as well as the economic impact of navigating life as a woman with NMO. Dr. Kaplan and Chelsey T, both moms, also provide their insights on motherhood through NMO. Listen along to find out how you can befriend your 'inner mean girl' and empower your sense of identity and femininity.

In this episode, Sumaira Foundation for NMO Patient Ambassadors Julie Aldridge, Kristen Hewitt and Alexis Marta share with host Chelsey their experiences navigating relationships with NMOSD. Together, they take a personal look at how NMO has shaped their friendships, ties with family, as well as with co-workers, classmates and professors. They discuss the strengths of communication, honesty and advocacy in their relationships, and how NMO has amplified them.

The Covid-19 pandemic has ravaged the world, and while we're going through another dark surge, there is hope- vaccines. The FDA just authorized and approved the first Covid-19 vaccine. While this is exciting, it also brings up a lot of questions, especially for people in the NMO community. In this episode, host Chelsey, PhD immunologist, chats with Sumaira on the basics of vaccines, and then talks with neuroimmunologist and NMO clinician Mary Rensel, MD of the Cleveland Clinic Mellen Center. Sumaira and Chelsey cover the basics on vaccines: What are vaccines? What's protective immunity? What's herd immunity? What're the types of vaccines? What's the Covid vaccine timeline of distribution look like?Dr. Rensel offers her clinical insight to discuss general vaccine considerations and recommendations for the NMO community, including: What are vaccine recommendations for NMO patients? Do NMO treatments affect vaccine response? Or safety concerns? Is there an effect of vaccines on NMO relapse?Please remember that the goal of this podcast is to educate and empower you to make the most informed decisions with your health care provider. This is not medical advice- please follow up with your health care team.*Chelsey is a medical science liaison with Sanofi-Genzyme, and her role in the CBJF is independent of Sanofi-Genzyme, and views/content shared do not reflect Sanofi-Genzyme.

In the season finale of season 1, Chelsey chats with Sumaira Ahmed of The Sumaira Foundation (TSF) for NMO for a recap on Demystifying NMO. Sumaira shares her insights as both an NMO patient, TSF founder and community leader. Chelsey and Sumaira rehash the episodes and provide their take-aways. They review the goals of the podcast, what they learned throughout the season, their favorite moments, optimism for the NMO community and what's to come.

In this episode, host Chelsey talks all things related to NMO pain with Dr. Shamik Bhattacharyya, a neurologist at Brigham and Women's Hospital and assistant professor of neurology at Harvard Medical School. Chelsey learns that pain is very prevalent in NMOSD, and presents itself in many ways. They chat a bit about the science of NMO-related pain, exploring how and why it's different than pain related to multiple sclerosis. Although there is no 'magic bullet' to wipe out NMO-pain, Dr. Bhattacharyya talks through the number of ways to manage chronic pain including lifestyle changes, medications, devices and complementary treatments. Dr. Bhattacharyya also answers questions on opiates (not to be used as backbone of pain management and used sparingly!), medical cannabis, cryotherapy and mindfulness. Lots to learn!

In this episode, Chelsey chats with Marissa Shackleton, Executive Director at the Elliot Lewis Center in Massachusetts. Marissa has 8 years of experience working with patients with NMO and multiple sclerosis and is active with the National MS Society and National Infusion Center Association. She’s a national speaker on access, reimbursement, infusion centers and practice management, and is passionate about patient care and access to affordable treatment. Marissa provides insight on insurance- What’s a deductible? What’s a premium? Any tips to choosing an insurance plan? What’s the difference between Medicaid and Medicare? What are some best practices to managing insurance and making sure treatment is approved? What financial options are available for treatment?In light of the COVID19 pandemic, Marissa also provides specific information regarding navigating healthcare and patient access in the era of this new virus, including insights on relevant aspects of the new legislation passed by Congress in response to the pandemic, the Families First Coronavirus Response Act.

Chelsey again speaks with Dr. Kaplan and Dr. Galetta, both practicing neurologists at Brigham and Women's Hospital and associated with Harvard Medical School. On this episode, they focus their discussion on postpartum considerations in NMOSD patients. They chat about topics that women living with NMO may experience immediately following giving birth. Questions covered: What do I need to know about breastfeeding? What do we know about treatment safety with breastfeeding? What about managing NMO symptoms postpartum? Postpartum depression? Who can provide support and help? Is NMO heritable?

On this episode, Chelsey follows up on the topic of sex and NMO and gets into a discussion on pregnancy with NMO. Chelsey explores this topic with Tamara Kaplan, MD and Kristin Galetta, MD, both practicing at Brigham and Women's Hospital and associated with Harvard Medical School. They discuss managing NMO treatments with pregnancy, how to treat a relapse while pregnant, potential safety concerns and more. Both Dr. Kaplan and Dr. Galetta emphasize that a successful pregnancy is possible while managing NMO, but it's crucial to have a planned approach with a trusted clinician. Listen for an in-depth talk that aims to inform about many key questions on NMO and pregnancy.

Sexual dysfunction is a common invisible symptom in NMOSD, but given the intimate nature of the topic, it's not discussed as much as it should. What exactly is sexual dysfunction? What causes it? What can be done about it? Hear the answers in a discussion between Chelsey and Dr. Tamara Kaplan, a neurologist at Brigham and Women's Hospital and assistant professor in neurology at Harvard Medical School. Dr. Kaplan shares her expertise in treating NMOSD and MS patients, including managing sexual dysfunction.

In episode 3 of Demystifying NMO, Chelsey shares her conversations with 3 inspiring individuals living with NMOSD: Chelsey Tucker, Ron Crowe and Marie Newbrough. In their chats, they share their experiences and emotional journeys through finding their NMO diagnosis and coping with the loss of their old lives. Each tell how they have worked to manage these whirlwind emotions, and have even found new perspectives that in some ways make them find gratitude in the new lives. We hope you appreciate this very special Thanksgiving episode. 

Episode 2 of Demystifying NMO by The Sumaira Foundation (TSF) for NMO and Connor B Judge Foundation (CBFJ) focuses on NMO Treatments: Acute vs Maintenance. Follow along to hear a candid conversation between Connor, of the CBJF and NMO patient, and his sister Chelsey, also scientific advisor with the CBJF. In their discussion, they talk about the differences in treatments to manage an active relapse versus to help prevent relapse.    Glossary of Terms Used AQP4: aquaporin-4; a water channel protein found in the CNS; antibodies can be made against this in NMOSD patients B-cell: a white blood cell that is a key component of the adaptive immune system and makes antibodies Immunosuppressant: a medication that reduces/supresses the function of some immune system component  MOG: myelin-oligodendrocyte glycoprotein; a myelin protein; antibodies can be made against this in some NMOSD patients Relapse: clinical disease activity/clinical worsening      

The Sumaira Foundation and Connor B Judge Foundation are proud to present their first episode of their new joint podcast, 'Demystifying NMO!' Follow along with Austin Hoover, who lives with multiple sclerosis (the 'cousin' of NMO), and Chelsey Judge, PhD immunologist, as they chat about the basic science of autoimmune disease and NMO. They'll cover 3 main questions: 1) What is an autoimmune disease? 2) How does autoimmunity happen? 3) How does the immune response contribute to NMO?   Glossary of Key Terms Discussed: Antigen: a particular component of a molecule/substance that the immune system recognizes Autoimmune disease: when the immune system targets some component of its own body and reacts against it Immune tolerance:When the immune system decides not to react against an antigen; ‘don’t react’ Anergy: when an immune cell becomes exhausted or functionless Serum: a component of the blood that contains proteins, including antibodies Seropositive: NMOSD patients who have the autoreactive AQP4 antibody in their serum Seronegative: NMOSD patients who do not have the anti-AQP4 antibody in their serum