The Sumaira Foundation

TSF's Human Collective Project Meetings
2024-05-09 20:00 - 21:00, 2024-04-11 20:00 - 21:00, 2024-03-14 20:00 - 21:00 (America/New_York) | Virtual: United States, United States
The Human Collective Project (HCP) is TSF’s support group meeting offered to anyone who has been affected/impacted by NMOSD/MOGAD. The program came into existence during the height of the COVID-19 pandemic in 2020, when most NMOSD/MOGAD felt particularly isolated and vulnerable to the coronavirus as immunosuppressed/immunocompromised members of society. The isolation many of us experienced unveiled a great need and opportunity for us to connect in a meaningful way to offer our support to one another.
Since 2020, we have expanded the program to offer more sessions in multiple geographies to ensure that everyone in the NMOSD/MOGAD communities feels welcomed and included. As we always say, HCP is a great way to meet others in similar circumstances in this rare community; it is a safe space to laugh, cry, vent, share wins, etc. This program is driven and led by TSF Patient and Caregiver Ambassadors worldwide.

El proyecto colectivo humano (HCP) | Español
2024-05-06 19:30 - 20:30 (America/Bogota) | Virtual: Colombia, Colombia
El Human Collective Project (HCP) es la reunión del grupo de apoyo de TSF que se ofrece a cualquier persona que haya sido afectada/impactada por NMOSD/MOG-AD. El programa nació durante el apogeo de la pandemia de COVID-19 en 2020, cuando la mayoría de los NMOSD/MOG-AD se sentían particularmente aislados y vulnerables al coronavirus como miembros de la sociedad inmunodeprimidos/inmunodeprimidos. El aislamiento que muchos de nosotros experimentamos reveló una gran necesidad y oportunidad para conectarnos de una manera significativa y ofrecernos apoyo unos a otros.
Desde 2020, hemos ampliado el programa para ofrecer más sesiones en múltiples geografías para garantizar que todos en las comunidades NMOSD/MOG-AD se sientan bienvenidos e incluidos. Como siempre decimos, HCP es una excelente manera de conocer a otras personas en circunstancias similares en esta rara comunidad; es un espacio seguro para reír, llorar, desahogarse, compartir victorias, etc. Este programa está impulsado y dirigido por pacientes y cuidadores embajadores de TSF en todo el mundo.

Il progetto collettivo umano (HCP) | Italia
2024-05-06 18:30 - 19:30 (Europe/Rome) | Virtual: Italy, Italy
The Human Collective Project (HCP) è l’incontro del gruppo di supporto di TSF offerto a chiunque sia stato colpito/colpito da NMOSD/MOGAD. Il programma è nato durante il culmine della pandemia di COVID-19 nel 2020, quando la maggior parte dei NMOSD/MOGAD si sentiva particolarmente isolata e vulnerabile al coronavirus come membri della società immunosoppressi/immunocompromessi. L’isolamento che molti di noi hanno vissuto ha svelato un grande bisogno e un’opportunità per noi di connetterci in modo significativo per offrire il nostro sostegno reciproco.
Dal 2020, abbiamo ampliato il programma per offrire più sessioni in più aree geografiche per garantire che tutti nelle comunità NMOSD/MOGAD si sentano accolti e inclusi. Come diciamo sempre, HCP è un ottimo modo per incontrare altri in circostanze simili in questa rara comunità; è uno spazio sicuro per ridere, piangere, sfogarsi, condividere vittorie, ecc. Questo programma è guidato e guidato dagli ambasciatori di pazienti e caregiver di TSF in tutto il mondo.

TSF’s Human Collective Project | Danmark
2024-05-01 19:00 - 20:00 (Europe/Copenhagen), 2024-04-03 19:00 - 20:00 (Europe/Amsterdam), 2024-03-06 19:00 - 20:00 (Europe/Amsterdam) | Virtual: Danmark, Denmark
The Human Collective Project (HCP) is TSF’s support group meetings offered to anyone who has been affected/impacted by NMOSD/MOGAD. The program came into existence during the height of the COVID-19 pandemic in 2020 when most NMOSD/MOGAD felt particularly isolated and vulnerable to the coronavirus as immunosuppressed/immunocompromised members of society. The isolation many of us experienced unveiled a great need and opportunity for us to connect in a meaningful way to offer our support to one another.
Since launching in 2020, we have expanded the program to offer more sessions and in multiple geographies to ensure that everyone in the NMOSD/MOGAD communities feel welcomed and included. As we always say, HCP is a great way to meet others in similar circumstances in this rare community; it is a safe space to laugh, cry, vent, share wins, etc. This program is driven and led by TSF Patient and Caregiver Ambassadors around the world.

PREMIÈRE MONDIALE | La vie c’est tout de suite
2024-04-30 19:00 - 20:00 (Europe/Paris) | Virtual: France, France
Nelly, la quarantaine, vit près de Beauvais en France. Cette professeure en milieu carcéral est une personne très active avec de nombreux amis et passe-temps. Malgré des années d’incertitude jusqu’à ce qu’elle reçoive enfin un diagnostic (MOGAD), elle n’a jamais laissé ses symptômes, pourtant graves, lui ôter sa joie de vivre.
Après 2 ans de travail, nous avons l’honneur de vous inviter à la première mondiale de “La vie, c’est tout suite,” l’histoire de Nelly Campos qui aura lieu le mardi 30 avril à 19h00. (heure de Paris) sur ce lien https://tinyurl.com/TSFNelly

HCP South Africa
2024-04-30 18:00 - 19:00, 2024-04-02 18:00 - 19:00 (Africa/Johannesburg) | Virtual: South Africa, South Africa
The Human Collective Project (HCP) is TSF’s support group meeting offered to anyone who has been affected/impacted by NMOSD/MOGAD. The program came into existence during the height of the COVID-19 pandemic in 2020, when most NMOSD/MOGAD felt particularly isolated and vulnerable to the coronavirus as immunosuppressed/immunocompromised members of society. The isolation many of us experienced unveiled a great need and opportunity for us to connect in a meaningful way to offer our support to one another.

Le Projet Collectif Humain
2024-04-25 20:00 - 21:00, 2024-03-28 20:00 - 21:00 (Europe/Paris) | Virtual: France, France
The Human Collective Project (HCP) est la réunion du groupe de soutien de TSF offerte à toute personne affectée par la NMOSD ou la MOGAD. Le programme a vu le jour au plus fort de la pandémie de COVID-19 en 2020, lorsque la plupart des patients NMOSD/MOGAD se sentaient particulièrement isolés et vulnérables au coronavirus en tant que patient dit “vulnérable” de part son traitement contre ma maladie.
L’isolement que beaucoup d’entre nous avons vécu a révélé un grand besoin et une opportunité pour nous de nous connecter de manière significative pour nous offrir notre soutien les uns aux autres.
Depuis 2020, nous avons élargi le programme pour offrir plus de sessions dans plusieurs zones géographiques afin de garantir que tous les membres des communautés NMOSD/MOGAD se sentent accueillis et inclus. Comme nous le disons toujours, HCP est un excellent moyen de rencontrer d’autres personnes dans des circonstances similaires dans cette communauté rare; c’est un espace sûr pour rire, pleurer, évacuer, partager les victoires, etc. Ce programme est piloté et dirigé par les patients et soignants ambassadeurs de TSF dans le monde entier.

Diferencias entre Esclerosis múltiple, NMOSD y MOG-AD
2024-04-25 19:30 - 20:30 (America/Bogota) | Virtual: Colombia, Colombia
El Dr Carlos Navas discutirá desde la perspectiva del paciente, las diferencias entre Esclerosis múltiple, NMOSD y MOGAD.

El Dr Navas es un médico colombiano dedicado al estudio y tratamiento de pacientes con enfermedades desmielinizantes. Acompáñanos en un nuevo From the Experts en español, el jueves 25 de abril a las 7:30 pm COT para estar en vivo con el Dr. Navas.

Los asistentes tendrán la oportunidad de hacer preguntas al Dr. Navas en tiempo real. Este seminario web se grabará y estará disponible para reproducirse en el canal de YouTube de TSF.

Este programa es posible gracias al apoyo de Amgen.

HCP Turkey
2024-04-22 19:30 - 20:30 (Europe/Istanbul) | virtual: Turkey, Turkey
Sumaira fonu olarak sizi aylık (hcp) zoom toplantimiza davet ediyoruz. Aşağıdaki belirtilmiş olan linke tıklayarak
Kaydınızı oluşturabilirsiniz
Sumaira foundation adına
Saygılarımla
Fatih Şen

Let's Talk About Cannabis: 4/20 Edition
2024-04-20 11:00 - 12:00 (America/New_York) | Virtual: United States, United States
Are you curious to learn about the use of medical marijuana to help manage your symptoms?
You’re invited to TSF’s upcoming webinar – “Let’s Talk About Cannabis: 4/20 Edition” – on Saturday, April 20th at 11 AM EST / 5 PM CET featuring Dr. Aaron Boster, neurologist & MS specialist.
This educational webinar invites patients, caregivers, clinicians, researchers, advocates and/or anyone interested in learning about medical marijuana in the setting of neurological conditions.
Live attendees will have the opportunity to ask Dr. Boster questions in real time. This is a safe space and a zero-judgment zone!
This webinar will be recorded and made available for replay on TSF’s YouTube channel and global website.

HCP India
2024-04-14 20:30 - 21:30 (Asia/Kolkata) | Virtual: India, India
The Human Collective Project (HCP) is TSF’s support group meetings offered to anyone who has been affected/impacted by NMOSD or MOGAD. The program came into existence during the height of the COVID-19 pandemic in 2020 when most NMOSD and MOGAD patients felt particularly isolated and vulnerable to the coronavirus as immunosuppressed/immunocompromised members of society. The isolation many of us experienced unveiled a great need and opportunity for us to connect in a meaningful way to offer our support to one another. Since launching in 2020, we have expanded the program to offer more sessions and in multiple geographies and languages to ensure that everyone in the NMOSD and MOGAD community feels welcomed and included. As we always say, HCP is a great way to meet others in similar circumstances in this rare community; it is a safe space to laugh, cry, vent, share wins, etc. This program is driven and led by TSF Patient and Caregiver Ambassadors around the world.

TSF Plauderstunde | HCP Germany
2024-04-10 19:30 - 20:30, 2024-03-13 19:30 - 20:30 (Europe/Amsterdam) | Virtual: Germany, Germany

HCP Italia
2024-04-08 18:30 - 19:30 (Europe/Rome) | Virtual: Italy, Italy

NMOSD, MOGAD, MS の類似点と相違点を理解する
2024-04-07 10:00 - 11:00 (Asia/Tokyo) | Virtual: Japan, Japan
視神経脊髄炎（NMOSD）、MOG抗体関連疾患（MOGAD）、多発性硬化症（MS）に関して４月７日（日）日本時間10:00からウェビナーを開催します。３疾患はどのような点が異なるかというお話について専門家が分かりやすく解説します。質問の時間もありますのでぜひご参加ください。
演題：「NMOSD、MOGAD、MSの類似点と相違点を理解する」 講師：藤原一男先生（福島県立医科大学）
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。 専門分野は多発性硬化症（MS）、視神経脊髄炎（NMOSD）、MOG抗体関連疾患（MOGAD）などの免疫性神経疾患。
※内容は録画し、後日、スマイラ財団のYouTubeチャンネルから再配信します。 ※このセミナーはアムジェン株式会社の支援のもと、MSキャビンと日本視神経脊髄炎患者会の協力によって開催します。

The Human Collective Project Global
2024-03-30 10:00 - 11:00 (America/New_York) | Virtual: Global

La rééducation et la récupération dans les maladies neurologiques (SEP, NMOSD, MOGAD)
2024-03-21 19:00 - 20:00 (Europe/Paris) | Virtual: France, France
A l’occasion du mois de sensibilisation à la NMOSD, le docteur Cécile Donzé nous fait le plaisir de venir aborder avec TSF France la rééducation et la réadaptation dans les maladies neurologiques (NMOSD, Mogad et Sclérose en plaques (SEP)). Toutes ces maladies se caractérisent par l’apparition de handicaps plus ou moins visibles mais qui ne sont pas définitifs pour la plupart si on peut bénéficier d’une bonne prise en charge.
Vous pourrez profiter d’un échange avec cette spécialiste reconnue de Médecine Physique et de Réadaptation, cheffe de service au centre spécialisé de Saint-Philibert-de-Lomme. Nous aborderons les aspects pratiques et répondrons à vos questions en direct.
Ce programme est rendu possible grâce au soutien d’Alexion Pharmaceuticals.

Compreendendo as semelhanças e diferenças entre NMOSD, MOGAD e MS
2024-03-21 19:00 - 20:00 (America/Sao_Paulo) | Virtual: Brazil, Brazil
Para celebrar o Mês de Conscientização sobre NMO 2024, convidamos pacientes, cuidadores, médicos e pesquisadores de língua portuguesa a participarem do primeiro webinar português da TSF: Compreendendo as semelhanças e diferenças entre DENMO, MOGAD e EM.
Este webinar ao vivo contará com a participação do Professor Jefferson Becker, da Pontifícia Universidade Católica do Rio Grande do Sul, que descreverá as semelhanças e diferenças entre NMOSD, MOGAD e esclerose múltipla.
Os participantes do webinar ao vivo terão a oportunidade de perguntar ao Prof. Becker questões em tempo real. A sessão será gravada e disponibilizada no YouTube.
Este programa é possível com o apoio da Amgen em colaboração com a The Sumaira Foundation, BCTRIMS e NMO Brasil.

La storia e l'evoluzione di NMOSD
2024-03-20 18:00 - 19:00 (Europe/Rome) | Virtual: Italy, Italy
Per celebrare il Mese della Consapevolezza NMO 2024, TSF Italia ti invita a partecipare a un webinar molto speciale con il Professor Luca Massacesi e la Dott.ssa Sara Mariotto mercoledì 20 marzo alle 18:00 CET.
In questo webinar in formato intervista, verrà fatto un excursus storico sulla neuromielite ottica, toccando anche diversi aspetti tra cui la complessa diagnosi differenziale e le conseguenti difficoltà nelle scelte terapeutiche prima della scoperta degli anticorpi anti-AQP4, l’impatto della scoperta degli anticorpi stessi e l’apporto dei diversi criteri diagnostici. Infine, verranno discussi aspetti più recenti come la caratterizzazione patogenetica dell’NMOSD facendo accenno anche alla diagnosi differenziale con malattie di più recente identificazione e le ultime strategie terapeutiche.
I partecipanti all’evento dal vivo avranno l’opportunità di porre domande agli esperti. Questo webinar sarà registrato e sarà disponibile per la riproduzione sul canale YouTube e sulla libreria multimediale di TSF.
Questo programma è reso possibile grazie al supporto di Amgen.

El Proyecto Colectivo Humano
2024-03-19 19:30 - 20:30 (America/Bogota) | Virtual: Colombia, Colombia

Was Betroffene über NMOSD und MOGAD wissen sollten
2024-03-19 19:00 - 20:00 (Europe/Berlin) | Virtual: Germany, Germany
Sie sind zum kommenden Webinar von TSF Deutschland eingeladen: Was Betroffene über NMOSD und MOGAD wissen sollten.
Besuchen Sie uns am Dienstag, den 19. März um 19:00 Uhr MEZ zu einer aufschlussreichen Diskussion mit Dr. Joachim Havla (Ludwig-Maximilians-Universität München) über alles, was Sie über NMOSD und MOGAD wissen müssen!
Teilnehmer des Live-Webinars haben die Möglichkeit, Dr. Havla Fragen zu stellen. Dieses Webinar wird aufgezeichnet und kann auf dem YouTube-Kanal und der globalen Website von TSF wiedergegeben werden.
Dieses Programm wird mit Unterstützung von Amgen ermöglicht. Eine Anmeldung ist erforderlich.

Verleden, heden en toekomst van behandelingen voor NMOSD en MOGAD
2024-03-18 19:00 - 20:00 (Europe/Amsterdam) | Virtual: Amsterdam, Netherlands
In deze webinar bespreken we de snel veranderende kennis over immuuntherapie bij NMOSD en MOGAD. Welke behandelingen gebruiken we nu? Welke nieuwe behandelingen zijn recent goedgekeurd? En wat heeft de toekomst in petto aan mogelijke innovatieve behandelingsopties?
Prof. Dr. Barbara Willekens, Universitair Ziekenhuis Antwerpen en Universiteit Antwerpen, België en dr. Beatrijs Wokke, Erasmus Medisch Centrum Rotterdam, Nederland, loodsen u door het complexe behandel-landschap van deze zeldzame ziekten.
Deelnemers aan het live webinar krijgen de mogelijkheid om vragen te stellen aan de experts. Dit webinar wordt opgenomen en kan worden afgespeeld op het YouTube-kanaal en de multimediabibliotheek van TSF.
Dit programma wordt mogelijk gemaakt met steun van Amgen.

Forståelse af ligheder og forskelle mellem NMOSD, MOGAD og MS
2024-03-14 16:00 - 17:00 (Europe/Copenhagen) | Virtual: Danmark, Denmark
Du inviteres til TSF’s første danske webinar!
Vi inviterer dansktalende patienter, plejere, klinikere, forskere og fortalere til at deltage i vores webinar – Forståelse af ligheder og forskelle mellem NMOSD, MOGAD og MS – med prof. Nasrin Asgari, neurolog ved Syddansk Universitet.
Deltagere, der vil deltage i live-begivenheden, vil have mulighed for at stille spørgsmål til prof. Asgari. Dette webinar vil blive optaget og tilgængeligt til afspilning på TSF’s YouTube-kanal og multimediebibliotek.
Dette program er gjort muligt med støtte fra Amgen.

TSF's New England Patient Day for NMOSD & MOGAD
2024-03-09 11:00 - 17:00 (America/New_York) | Mass General Brigham, 399 Revolution Drive, Somerville, MA, 02145, United States
Are you an NMOSD/MOGAD patient, caregiver, clinician, nurse, researcher and/or advocate in New England? You’re invited!
In collaboration with Dr. Michael Levy at Mass General Hospital, The Sumaira Foundation is pleased to invite you to TSF’s New England Patient Day, a special day dedicated to NMOSD & MOGAD patients, caregivers, clinicians and researchers.
Join us for a day of education, community, and fun where you’ll:

Meet NMOSD & MOGAD patients, caregivers and clinicians from New England
Ask experts questions in real time about symptom management, treatments and therapies, co-morbidities and more

Learn about updates on the latest research and findings from local key opinion leaders

Make connections and engage in meaningful discussions with the local NMOSD/MOGAD community

This is a free event and lunch will be served.
We’re excited to meet you!
The Sumaira Foundation team
