The Sumaira Foundation

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.

Le Projet Collectif Humain
2024-03-28 20:00 - 21:00, 2024-04-25 20:00 - 21:00, 2024-06-27 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.

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

HCP South Africa
2024-04-02 18:00 - 19:00, 2024-04-30 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.

TSF’s Human Collective Project | Danmark
2024-04-03 19:00 - 20:00 (Europe/Amsterdam), 2024-05-01 19:00 - 20:00 (Europe/Copenhagen) | 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.

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。

HCP Italia
2024-04-08 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 Plauderstunde | HCP Germany
2024-04-10 19:30 - 20:30 (Europe/Amsterdam) | Virtual: Germany, Germany

TSF's Human Collective Project Meetings
2024-04-11 20:00 - 21:00, 2024-05-09 20:00 - 21:00, 2024-06-13 20:00 - 21:00 (America/New_York) | Virtual: United States, United States

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.

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 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

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.

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

Il progetto collettivo umano (HCP) | Italia
2024-05-06 18:30 - 19:30, 2024-07-08 18:30 - 19:30 (Europe/Rome) | Virtual: Italy, Italy

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.

TSF Plauderstunde (HCP) | Deutsch
2024-05-15 19:30 - 20:30 (Europe/Amsterdam) | Virtual: Germany, Germany

Démarches administratives et handicap
2024-05-27 14:00 - 15:00 (Europe/Paris) | Virtual: France, France
Nous vous invitons à rejoindre notre prochain webinaire le lundi 27 mai à 14h00 CET avec Marie Delenne, Patiente Experte Sclérose en Plaques et ancienne Inspectrice du Travail.
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.
Ce programme est rendu possible grâce au soutien d’Alexion.

Human Collective Project | South Africa
2024-05-28 18:00 - 19:00 (Africa/Johannesburg) | Virtual: South Africa, South Africa

TSF's Cleveland Patient Day for NMOSD & MOGAD
2024-06-15 11:00 - 17:00 (America/New_York) | Cleveland Clinic Administrative Campus Building 4, 3175 Science Park Drive, Beachwood, 44122, United States
Are you an NMOSD/MOGAD patient, caregiver, clinician, nurse, researcher and/or advocate in or around Ohio? You’re invited to our special day!
In collaboration with Dr. Amy Kunchok, Dr. Mary Rensel and Dr. Justin Abbatemarco at the Cleveland Clinic, The Sumaira Foundation is pleased to invite you to TSF’s Cleveland 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 local NMOSD & MOGAD patients, caregivers and clinicians
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

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

Approved NMOSD Therapies
2024-06-21 12:00 - 13:00 (America/New_York) | Virtual: Global
In 2014, there were 0 FDA-approved therapies for patients living with neuromyelitis optica spectrum disorder (NMOSD). In 2024, there are 4 efficacious, FDA-approved therapies available for patients living with NMOSD.
You’re invited to “Approved NMOSD Therapies” a live webinar during which Dr. Sean Pittock* of the Mayo Clinic will provide overviews (pharmacology, drug delivery method, dosing, frequency, side effects, reduction in relapse rates, antibody criteria, etc.) of each approved therapy.
We invite patients, caregivers, clinicians, researchers, advocates, industry professionals or anyone interested in NMOSD to join this educational program. Live attendees will have the opportunity to ask Dr. Pittock questions in real time.
This webinar will be recorded and made available for replay on TSF’s YouTube channel and global website.
*Sean J. Pittock, M.D.
Consultant, Department of Neurology
Professor of Neurology
Marilyn A Park and Moon S. Park, M.D. Director of the Mayo Clinic’s Center for Multiple Sclerosis and Autoimmune Neurology,
Applebaum Family Professor of Neurosciences

Human Collective Project | South Africa
2024-06-25 18:00 - 19:00 (Africa/Johannesburg)

Mi enfermedad ¿Tierra o Sol?
2024-07-04 19:00 - 20:00 (America/Bogota) | Virtual: Colombia, Colombia
Convivir con un diagnóstico médico puede representar desafíos en diferentes áreas, pero ¿Eso significa necesariamente que se convierte en el sol alrededor del que todos los planos de mi vida giran? ¿Qué hay de si también planteamos la posibilidad de que podría ser como el planeta Tierra?, que si bien tiene al Sol como referencia para moverse, tiene vida propia más allá de él.
En julio, queremos hablar de la salud mental. La psicóloga Silvia Guzmán nos lleva a un espacio reflexivo para cavilar sobre estas preguntas y conocer cómo los procesos psicológicos como el pensamiento, la motivación y la emoción, influyen en la convivencia con la enfermedad. Al final, podrás responderte: “mi enfermedad ¿Tierra o Sol?. Acompáñanos el próximo 4 de julio a las 7 pm COT.
