Episode #31 | EUPATI Education in Action: Leda's Path to Patient Advocacy

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/TheSumairaFoundationTIMESTAMP:00:01:03 Marie Abrego00:04:06 Marie & Bambi00:20:42 AnneMarie Nawrocki00:23:37 Pets & Wellbeing00:27:13 Physical benefits00:35:57 Loss of a Pet00:39:29 Coping with the Inevitable00:42:03 Supporting a Grieving Pet OwnerSUPPORT THE PODCAST:Donate to Illuminatehttps://www.sumairafoundation.org/advocacy/donate/CREDITS:Producer & Host - Brian DawsonMusic - Denys Kyshchuk from Pixabay

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 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 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