The Sumaira Foundation
The Sumaira Foundation
  • Видео 282
  • Просмотров 100 167
Hannah shares her Cleveland Patient Day experience
Hannah, a MOGAD patient, experience participating at Cleveland Patient Day.
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On June 15, 2024, TSF hosted a Patient Day for NMOSD & MOGAD in Cleveland, partnering with Dr. Amy Kunchok, Dr. Mary Rensel and Dr. Justin Abbatemarco at Cleveland Clinic.
This event was made possible with support from Amgen, Alexion Pharmaceuticals, UCB, Genentech and EUROIMMUN US.
Просмотров: 18

Видео

Kayla shares her Cleveland Patient Day experience
Просмотров 41День назад
Kayla Miller, seronegative NMOSD patient and TSF Ambassador of Michigan, shares her experience participating at Cleveland Patient Day. On June 15, 2024, TSF hosted a Patient Day for NMOSD & MOGAD in Cleveland, partnering with Dr. Amy Kunchok, Dr. Mary Rensel and Dr. Justin Abbatemarco at Cleveland Clinic. This event was made possible with support from Amgen, Alexion Pharmaceuticals, UCB, Genent...
Approved NMOSD Therapies
Просмотров 118День назад
In 2014, there were 0 FDA-approved therapies for patients living with neuromyelitis optica spectrum disorder (NMOSD). In 2024, there are 4 FDA-approved therapies available for patients living with NMOSD. In this webinar, Dr. Sean Pittock provided overviews (pharmacology, drug delivery method, dosing, frequency, side effects, reduction in relapse rates, antibody criteria, etc.) of the approved t...
Episode #35 | Movement as Medicine with Dr.Gretchen
Просмотров 31День назад
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 b...
Démarches administratives et handicap
Просмотров 3421 день назад
Démarches administratives quand on est en situation de handicap, quelle galère ! Travail, Sécu, MDPH, RQTH, Retraite ! Venez en parler avec nous et recevoir les conseils de notre Experte qui aide depuis des années des Patients comme vous. Regardez ce webinaire complet mettant en vedette Marie Delenne, patiente experte en sclérose en plaques et ancienne inspectrice du travail. Ce programme est r...
Episode #34 | From Brain Fog to Clarity Finding Voice and Purpose with Alanna Yee
Просмотров 40Месяц назад
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 guid...
Episode #33 | From Patient to Practitioner w/ Roselyne
Просмотров 29Месяц назад
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 feeling...
Diferencias entre Esclerosis múltiple, NMOSD y MOGAD
Просмотров 2852 месяца назад
De manera amigable para los pacientes, el Dr. Carlos Navas explicó las similitudes y diferencias entre la esclerosis múltiple, NMOSD y MOGAD. El Dr Navas es un médico colombiano dedicado al estudio y tratamiento de pacientes con enfermedades desmielinizantes. Este programa es posible gracias al apoyo de Amgen.
Let's Talk About Cannabis: 4/20 Edition
Просмотров 1262 месяца назад
Are you curious to learn about the use of medical marijuana to help manage your symptoms? On 4/20 (IYKYK), we were joined by Dr. Aaron Boster, neurologist & MS specialist, who diligently answered a variety of questions related to the use of medical marijuana in the setting of neurological conditions. We are so grateful to Dr. Boster for his knowledge, expertise and advocacy for this important t...
Episode #32 | Beyond Words: The Silent Support of Animal Companions
Просмотров 382 месяца назад
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; they explore the multifaceted benefits of...
NMOSD, MOGAD, MS の類似点と相違点を理解する
Просмотров 3412 месяца назад
主 催:スマイラ財団 協 力:MSキャビン / 日本視神経脊髄炎患者会 協 賛:アムジェン株式会社 配信日:2024年4月7日(日) 内 容:視神経脊髄炎(NMOSD)、MOG抗体関連疾患(MOGAD)、多発性硬化症(MS)はどのような点が異なるかについて 演 者:藤原一男先生 脳神経内科医。福島県立医科大学医学部 多発性硬化症治療学講座 教授。 脳神経疾患研究所附属南東北病院 多発性硬化症・視神経脊髄炎センター センター長。 専門分野はMS、NMOSD、MOGADなどの免疫性神経疾患。
Greetings from NMOSD Japan!
Просмотров 302 месяца назад
Greetings from NMOSD Japan!
Episode 31 | EUPATI Education in Action: Leda's Path to Patient Advocacy
Просмотров 243 месяца назад
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 awarenes...
Welcome & Introductions | Understanding NMOSD & MOGAD Clinician Perspectives
Просмотров 1633 месяца назад
We learned about the latest developments on NMOSD & MOGAD from the experts themselves. Our first session featured key opinion leaders based in the New England area: Tanuja Chitnis, MD, PhD (Brigham & Women's Hospital) Hamza Coban, MD (UConn Health) Michael Levy, MD, PhD (Massachusetts General Hospital) Marcelo Matiello, MD (Massachusetts General Hospital) On March 9, 2024, TSF hosted a Patient ...
Participating in Clinical Trials: How Patients Can Make a Difference
Просмотров 293 месяца назад
Erin Brown (Lead Clinical Project Manager - UCB’s Rare Disease Organization), discussed the importance of patient participation in clinical trials for rare diseases. On March 9, 2024, TSF hosted a Patient Day for NMOSD & MOGAD in New England in collaboration with Dr. Michael Levy and Dr. Marcelo Matiello at the Mass General Brigham headquarters located in Boston, MA. Our event was joined by 100...
Managing NMOSD & MOGAD: Addressing Symptoms & Co-morbidities
Просмотров 1803 месяца назад
Managing NMOSD & MOGAD: Addressing Symptoms & Co-morbidities
Self-Advocacy & Working Together with Your Doctor
Просмотров 1133 месяца назад
Self-Advocacy & Working Together with Your Doctor
Living with NMOSD & MOGAD - Patient Perspectives
Просмотров 1643 месяца назад
Living with NMOSD & MOGAD - Patient Perspectives
Achieving Health Equity for All: Challenges & Opportunities for Improvement
Просмотров 493 месяца назад
Achieving Health Equity for All: Challenges & Opportunities for Improvement
Compreendendo as semelhanças e diferenças entre NMOSD, MOGAD e MS
Просмотров 403 месяца назад
Compreendendo as semelhanças e diferenças entre NMOSD, MOGAD e MS
La rééducation et la récupération dans les maladies neurologiques (SEP, NMOSD, MOGAD)
Просмотров 1573 месяца назад
La rééducation et la récupération dans les maladies neurologiques (SEP, NMOSD, MOGAD)
La storia e l'evoluzione di NMOSD
Просмотров 863 месяца назад
La storia e l'evoluzione di NMOSD
Was Betroffene über NMOSD und MOGAD wissen sollten
Просмотров 1123 месяца назад
Was Betroffene über NMOSD und MOGAD wissen sollten
Verleden, heden en toekomst van behandelingen voor NMOSD en MOGAD
Просмотров 1053 месяца назад
Verleden, heden en toekomst van behandelingen voor NMOSD en MOGAD
Forståelse af ligheder og forskelle mellem NMOSD, MOGAD og MS
Просмотров 483 месяца назад
Forståelse af ligheder og forskelle mellem NMOSD, MOGAD og MS
Episode 30 | Navigating NMO in Challenging Circumstances
Просмотров 413 месяца назад
Episode 30 | Navigating NMO in Challenging Circumstances
Myths & Facts - Family Planning Considerations for NMOSD & other rare neurological conditions
Просмотров 573 месяца назад
Myths & Facts - Family Planning Considerations for NMOSD & other rare neurological conditions
Episode 23 | Service Dogs 101
Просмотров 204 месяца назад
Episode 23 | Service Dogs 101
Episode 24 | Working with NMO & MOG
Просмотров 244 месяца назад
Episode 24 | Working with NMO & MOG
Episode 22 | Resilience & Chronic Illness
Просмотров 384 месяца назад
Episode 22 | Resilience & Chronic Illness

Комментарии

  • @jadamtrebino413
    @jadamtrebino413 7 дней назад

    Quale ospedale che si occupa di questa malattia

  •  8 дней назад

    More about mogad please, can be negative after the second attack, there is pain but a low level of antybody, is this possible?

  • @tdroney1
    @tdroney1 28 дней назад

    Did the panelists go through rehab?

  • @tdroney1
    @tdroney1 28 дней назад

    My 21yo son is currently going through this. Where is Dr. Greenburg located? We're in need of his assistance asap.

  • @nancylucia9260
    @nancylucia9260 Месяц назад

    Genial la información compartida. Gracias al doctor y a todos los participantes 🙏🌹🙏

  • @barbarapawowska5587
    @barbarapawowska5587 Месяц назад

    Świetna inicjatywa!

  • @evelyncruzgomez8394
    @evelyncruzgomez8394 2 месяца назад

    A mí hija le dieron diagnóstico de vasculitis hace 3 años y le han dado esteroides pero ahora dicen que puede ser mogad y desde los 6 años si diagnóstico fue epilepsia la atiende el INP pero en 10 años no han podido dsr un diagnóstico certero apneas empezó a perder visión repentina y adormecimiento de mitad del cuerpo.

  • @guadalupezeachelius7833
    @guadalupezeachelius7833 2 месяца назад

    Desafortunadamente a mi nieta le dio mog, y esta muy enferma desde hace más de dos años se lo diagnosticaron y dijeron que no tenía cura.

  • @sharonhardgrave6272
    @sharonhardgrave6272 2 месяца назад

    Thank you so much, such heart felt information and stories.❤

  • @jagwari04
    @jagwari04 3 месяца назад

    Bonjour à vous Je suis un homme de 38 ans. Dans mon cas j'ai fait une névrite optique sévère sur les deux yeux au mois de décembre 2023. Après plusieurs prises de corticoides et échanges plasmatiques, je ne vois toujours pas clair à date (avril 2024). En effet, j'ai une sensation de voir au travers d'un voile blanc et un contraste des couleurs très significatif (les couleurs sont délavées!). Je ne sais pas si j'aurai une meilleure récupération dans les prochains mois!? Pourriez-vous, SVP, m'indiquer s'il existe des filtres qui puissent me permettre de voir sans ce contraste de couleur et sans ce voile blanc ? Je vous remercie d'avance pour votre retour

  • @yolandarosales377
    @yolandarosales377 3 месяца назад

    Hola desde mexico mi hija le dio neuromilitis optica ya lleva 2 años y toma azitropina pero tiene muchos calambres y si salio con acuaparina 4 perdio la vista del ojo izquierdo que podria darle aparte de lo que toma toma prednisona

  •  3 месяца назад

    Le nom de l'application svp?

  • @elisadamiani5504
    @elisadamiani5504 3 месяца назад

    Complimenti! ❤️

  • @nellygreen3171
    @nellygreen3171 3 месяца назад

    Thank for all the encouraging, I’m am diagnosed in 2009 with MS. At the end of the year 2023. My right eye start getting blurry. February 2024 they diagnosed me with NMOSD. I’ll already started my first infusion therapy last March 4. I have a good days and also a bad days. I’m adjusting of everything.

  • @martaromero3829
    @martaromero3829 3 месяца назад

    Hola Me podria decir si MOGAD causa ceguera

  • @alemneshendale-us3ym
    @alemneshendale-us3ym 4 месяца назад

    IAM LIVING WITH NMO FOR 4 YEARS WITHE OUT RELAPS IAM SO OK

  • @geamigpubgnakl8900
    @geamigpubgnakl8900 4 месяца назад

    Halo cantik kamu tambah cantik sempurna bisa kenalan kah sayang nama ku imam Jawa Indonesia

  • @sharonhardgrave6272
    @sharonhardgrave6272 4 месяца назад

    Thankyou for being you Michael 💓

  • @sharonhardgrave6272
    @sharonhardgrave6272 4 месяца назад

    So beautifully said.❤

  • @NataS1407
    @NataS1407 4 месяца назад

    Bardzo pomocny filmik dla osob które zmagają się z choroba MoGad o której jest bardzo mało informacji. Dziękuję za dodanie.

  • @user-uw2xi3ch8e
    @user-uw2xi3ch8e 4 месяца назад

    I feel. much. sorry. for. you .

  • @HamidUllah-rs5vr
    @HamidUllah-rs5vr 4 месяца назад

    🌹🥀🌷🌸🌺🍑🍎🥭🍍🍓🍏🍈🍐🍊🍋

  • @zarczyma31
    @zarczyma31 5 месяцев назад

    Dziękuję za ten materiał

  • @geethasiri9052
    @geethasiri9052 5 месяцев назад

    Salve vi contatto perché mi è stata diagnosticata MOGAD mi date dei vostri contatti

  • @sharonhardgrave6272
    @sharonhardgrave6272 5 месяцев назад

    Is this something new, we will know some points of what he is saying in English.

  • @laurag7697
    @laurag7697 5 месяцев назад

    Habla español se entiende mejor

  • @sharonhardgrave6272
    @sharonhardgrave6272 5 месяцев назад

    Happy New Year ❤

  • @sharonhardgrave6272
    @sharonhardgrave6272 5 месяцев назад

    Beautiful thankyou ❤

  • @zaffarali657
    @zaffarali657 6 месяцев назад

    Hello mam i am from kashmir

  • @bridiellewellyn8469
    @bridiellewellyn8469 6 месяцев назад

    wow. There are a few of us around! i’m in England and now under Oxford hospital always hearing how rare it is, so it’s great to be able to see and hear other stories so similar

  • @sharonhardgrave6272
    @sharonhardgrave6272 6 месяцев назад

    Thankyou so much, you give us hope. ❤

  • @Aljuboori1980
    @Aljuboori1980 6 месяцев назад

    اني عندي MOG وآخذ ابره كل شهر RoActemra 20 mg/ml

    • @MedMed-rb6fl
      @MedMed-rb6fl 6 месяцев назад

      ممكن تعطيني رقمك اريد اسئلك

    • @oussamaben7549
      @oussamaben7549 2 месяца назад

      اذا ممكن نتواصل اخي ..من فضلك

    • @SaifJuboori
      @SaifJuboori 2 месяца назад

      ممكن

    • @SaifJuboori
      @SaifJuboori 2 месяца назад

      كيف نتواصل

    • @SaifJuboori
      @SaifJuboori 2 месяца назад

      0046

  • @jesusvoice8573
    @jesusvoice8573 6 месяцев назад

    Please help me for the better treatment. Iam suffering with nmo.

  • @jesusvoice8573
    @jesusvoice8573 6 месяцев назад

    Hi sister. Iam suffering with nmo. Which type of treatment did you take

  • @cindya12
    @cindya12 6 месяцев назад

    Very clear and informative! Thank you!!

  • @conswallajohnson3197
    @conswallajohnson3197 7 месяцев назад

    Are you on psych meds as your every day norm??? Were you on them? We have been on this journey since Sept 22. We are through the physical journey ( thank GOD) but we're still having mental issues .can you tell me do you take any meds continually??

  • @MAKTHEROCK1
    @MAKTHEROCK1 7 месяцев назад

    What an amazing webinar it was!!!

  • @sharonhardgrave6272
    @sharonhardgrave6272 7 месяцев назад

    Will we ever know what they were saying.?

  • @KnewEyes1990
    @KnewEyes1990 7 месяцев назад

    Thank You all of you for sharing ❤❤❤❤

  • @laurag7697
    @laurag7697 8 месяцев назад

    Hay muchas personas con esta enfermedad en España

  • @AndreaSanna-jn5ep
    @AndreaSanna-jn5ep 8 месяцев назад

    M

  • @khadijaalhaije3562
    @khadijaalhaije3562 8 месяцев назад

    يعني بمرض الnmoبعد فصل الدم واعاده التحليل نتوقع عدم حدوث هجمه حتى بدون اخذ علاج طويل الامد

  • @serafinakastrioti8142
    @serafinakastrioti8142 9 месяцев назад

    Wie lange dauert ein MOG-IGg Nachweis aus dem Liquor?

  • @FragDichMal
    @FragDichMal 9 месяцев назад

    Leider schaue ich schon seid 30 Minuten, es wird erzählt , viel erzählt wie schlimm es ist, was es tut, und so weiter, aber was ist mit Therapien, Heilung, richtige Tipps ?

    • @matthiasfuchs332
      @matthiasfuchs332 9 месяцев назад

      Die Themen, die sie ansprechen, Therapie, Heilung und Tipps waren in diesem Webinar leider nicht auf der Tagesordnung. Es sollte wirklich um die Differenzierung der Erkrankungen gehen. Zum Austausch über den Alltag mit NMOSD und MOGAD lade ich sie gerne zu wir.und.nmo bei Facebook und Instagram ein. Vielleicht sehen wir uns ja in der Plauderstunde. Herzlichenl Grüße, Matthias

  • @nadinedesabre665
    @nadinedesabre665 9 месяцев назад

    👏👏👏👏👏

  • @shalmalijain
    @shalmalijain 10 месяцев назад

    How do i reach out to you? I need some guidance.. please help...

  • @silviavictor2026
    @silviavictor2026 10 месяцев назад

    Molto bello questo video spiega molto bene, è importantissimo avere informazioni su questa malattia non sempre conosciuta, io ho scperto de avere NMO nel 2019 dopo tante diagnosi sbagliata. 🤗

    • @elenadamiani749
      @elenadamiani749 10 месяцев назад

      Grazie Silvia. Grazie per il tuo feedback! Essere aggiornati è fondamentale!

  • @MoniSavantAleina-kr5kw
    @MoniSavantAleina-kr5kw 10 месяцев назад

    Sono Monica mi è molto interessato il suo discorso mi hanno diagnosticato la mogad dopo un anno e mezzo e purtroppo ho avuto parecchi ricovero però sono stata curata bene a quanto ho capito con cinque giorni di cortisone da un grammo e poi plasmaferesi per cinque cicli e poi faccio la monoclonale con retibuc però purtroppo la malattia ha parecchie recidive e occhio sinistro mi ha portato subito alla cecità invece quello destro viene colpito un Po alla volta nn ci sono altre terapie per contrastare questa malattia per poter fare una vita nn dico normale ma almeno apprezabie e nn sl guarisce di questa malattia o almeno fare in modo sl tenerla a bada e nn avete un ricovero dietro al sltro io ha maggio sono stata ricoverata e a luglio dinnuovo in un anno ho fatto cinque ricoveri e tre plasmaferesi che unica cosa che mi aiuta un po mi torna la vista dall occhio destro da due decimi a quattro dei decimi e in piu mi è venuta pure la cataratta solo che dura pochi mesi e torno a nn vedere sl può fare altro si è scoperto solo nel ultimo ricovero gli anticorpi non che sono 515prima erano sempre negativi ed era un problema speriamo di stare meglio perché nn vedendo riscontro e fisicamente ti sbatte molto sono ingrassata parecchio e in piu coloro e tremolio ogni tanto perché anche il corpo ne ha patito faccio cinquanta metri e mi devo fermare nn sono più in grado dì fare le cose che facevo prima e quando faccio qualcosa in piu poi devo dormire che i tre ore io prima del una persona molto attiva facevo tante ore dì lavoro camminavi parecchio e andavo in bici avevo parecchia forza ora faccio praticamente niente ha confronto e sono sempre stanca se sapete qualcosa in piu se mi scrive dottoressa mi ha un gran favore da fare un vita dignitosa anche se so che dovrò convivere con la mia malattia grazie aspetto una sua risposta

    • @TheSumairaFoundation
      @TheSumairaFoundation 10 месяцев назад

      Ciao Monica! Abbiamo inviato il tuo messaggio alla Dott.ssa Mariotto che sarà felice di vederti nel suo ambulatorio presso l'Università di Verona. Puoi anche inviarle le tue cartelle cliniche per una seconda opinione, se lo desideri. Si prega di inviare un'e-mail a info@sumairafoundation.org se si è interessati a entrambe le opzioni.

  • @mariavalore6682
    @mariavalore6682 11 месяцев назад

    Thanks for sharing!

  • @mariavalore6682
    @mariavalore6682 11 месяцев назад

    Steroids are so horrible!