Demystifying NMO & MOG

di The Sumaira Foundation

Neuromyelitis Optica Spectrum Disorder (NMOSD) and Myelin Oligodendrocyte Glycoprotein antibody disease (MOGAD) are neurological autoimmune diseases that cause blindness and paralysis. While NMOSD and MOGAD are rare diseases, autoimmune diseases are common, and so is finding scientific and medical jargon tricky to understand. In this podcast, The Sumaira Foundation works to simplify the science associated with NMOSD, MOGAD, and ...   ...  Leggi dettagli
Medicina
Scienze naturali

Episodi del podcast

  • Stagione 3

  • Episode 28 | Financial Assistance For NMO & Critical Insurance Updates w/ the Pan Foundation

    Episode 28 | Financial Assistance For NMO & Critical Insurance Updates w/ the Pan Foundation

    S03 E10
    38:05

    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 NMO

    Episode 27 | Double Seronegative NMO

    S03 E09
    52:11

    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

  • Episode 26 | The Employment Impact of NMO & MOG w/ Dr. Farrah Mateen

    Episode 26 | The Employment Impact of NMO & MOG w/ Dr. Farrah Mateen

    S03 E08
    54:38

    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

  • Episode 25 | Responding To Life’s Challenges Featuring Dr. Maggie Kang

    Episode 25 | Responding To Life’s Challenges Featuring Dr. Maggie Kang

    S03 E07
    41:32

    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

  • Episode 24 | Working with NMO & MOG

    Episode 24 | Working with NMO & MOG

    S03 E06
    44:43

    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