The Sumaira Foundation

Understanding MOGAD & The Importance of Patient Participation in Clinical Trials
2025-09-04 20:00 - 21:00 (Europe/London) | Virtual: Global
Have you or someone close to you been affected by MOGAD? Join us on Thursday, September 4th to learn about MOGAD and the importance of patient participation in clinical trials. This program will feature Dr. Saif Huda (The Walton Centre – UK), Dr. Silvia Messina (Nuffield Department of Clinical Neurosciences – UK) and Dr. Katharina Fink (Karolinska University Hospital and Karolinska Institutet – Sweden) who will answer questions from our audience in real time. This program is promoted by the Sumaira Foundation in collaboration with mymyelitis and is made possible with support from UCB.

Comprendre MOGAD et l'importance de la participation des patients aux essais cliniques
2025-09-02 17:00 - 18:00 (Europe/Paris) | Virtual: France, France
Avez-vous été touché(e) ou l’un de vos proches par MOGAD ? Rejoignez-nous le mardi 2 septembre pour en savoir plus sur MOGAD et l’importance de la participation des patients aux essais cliniques. Ce programme sera animé par le Pr Jérôme de Seze (Université de Strasbourg – France) et le Dr Sophie Elands (Hôpital Érasme – Hôpital Universitaire de Bruxelles – Belgique) qui répondront aux questions de notre public. Ce programme est soutenu par la Fondation Sumaira et est rendu possible grâce au soutien d’UCB.

Human Collective Project | Africa
2025-08-27 19:00 - 20:00, 2025-07-30 19:00 - 20:00, 2025-06-25 19:00 - 20:00, 2025-05-28 19:00 - 20:00 (Africa/Johannesburg)
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.

Compreendendo a MOGAD e a importância da participação do paciente em ensaios clínicos
2025-08-18 11:00 - 12:00 (America/Sao_Paulo) | Virtual: Brazil, Brazil
Você ou alguém próximo a você foi afetado pelo MOGAD? Junte-se a nós na segunda-feira, 18 de agosto, para aprender sobre MOGAD e a importância da participação de pacientes em ensaios clínicos. Este programa contará com a participação do Dr. Douglas Kazutoshi Sato (do Brasil) e da Dra. Ernestina Santos (de Portugal), que responderão a perguntas da nossa plateia em tempo real. Este programa é promovido pela Fundação Sumaira em colaboração com a NMO Brasil e a ABNMO e é possível graças ao apoio da UCB.

TSF's Intermountain West Patient Day for Rare Neuroinflammatory Disorders
2025-08-16 11:00 - 17:00 (America/Phoenix) | University of Utah, UT, United States
TSF is coming to Salt Lake City!
Are you an AE*, CNS Vasculitis, MOGAD*, neurosarcoidosis, NMOSD* or SPS* patient, caregiver, clinician, nurse, researcher and/or advocate from the Intermountain West region? You’re invited to our event on Saturday, August 16th at the University of Utah Health.
Join us for a day of education, community, and fun to:

Meet local AE, CNS Vasculitis, MOGAD, neurosarcoidosis, NMOSD or SPS patients, caregivers and clinicians
Ask experts questions in real time about symptom management, treatments and therapies, comorbidities and more
Learn about updates on the latest research and findings from local key opinion leaders

This in-person event is free and lunch will be served. We can’t wait to see you in SLC!
The Sumaira Foundation team
—
NMOSD stands for neuromyelitis optica spectrum disorder
MOGAD stands for myelin oligodendrocyte glycoprotein antibody-associated disorder
AE stands for autoimmune encephalitis
SPS stands for stiff person syndrome

TSF's Human Collective Project Meetings
2025-08-14 20:00 - 21:00, 2025-07-10 20:00 - 21:00, 2025-06-12 20:00 - 21:00, 2025-05-08 20:00 - 21:00, 2025-04-10 20:00 - 21:00, 2025-03-13 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.

Chicago Patient Day for Rare Neuroinflammatory Disorders
2025-07-26 11:00 - 17:00 (America/Chicago) | Rush University Medical Center, 1725 West Harrison Street #5th floor, Chicago, IL, 60612, United States
Are you an NMOSD*, MOGAD*, AE*, MG* or SPS* patient, caregiver, clinician, nurse, researcher and/or advocate in the Chicagoland area? You’re invited to our event on Saturday, July 26th at Rush University Medical Center’s Searle Center. We are proud to collaborate on this event with the Chicago MS Alliance.
Join us for a day of education, community, and fun to:

Meet local NMOSD, MOGAD, AE, MG and SPS 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 in-person event is free and lunch will be served. We can’t wait to see you in CHI-town!
The Sumaira Foundation team
—
NMOSD stands for neuromyelitis optica spectrum disorder
MOGAD stands for myelin oligodendrocyte glycoprotein antibody-associated disorder
AE stands for autoimmune encephalitis
MG stands for myasthenia gravis
SPS stands for stiff person syndrome

TSF's Human Collective Project Meetings [Pride Edition]
2025-06-19 20:00 - 21:00 (America/New_York) | Virtual: United States, United States
Pride is more than just a month. We recognize the unique challenges faced by those navigating both an LGBTQIA+ identity and a rare disease diagnosis, and we’re here to ensure you don’t have to face them alone. The Human Collective Project (HCP) is TSF’s support group meeting offered to anyone who has been affected/impacted by Acute disseminated encephalomyelitis (ADEM), Autoimmune encephalitis (AE), Multiple sclerosis (MS), Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD), Neuromyelitis optica spectrum disorder (NMOSD), Optic neuritis (ON) or Transverse myelitis (TM). Please join us to offer support to one another and meet others who truly understand our journeys.
Together, we can create a compassionate community that understands and supports the unique experiences of living with ADEM, AE, MOGAD, MS, NMOSD, ON, and TM as an LGBTQIA+ individual. This program is driven and led by TSF Patient and Caregiver Ambassadors worldwide.

Hacer ejercicio con una enfermedad autoimmune
2025-06-19 18:00 - 19:00 (America/Mexico_City) | Virtual: Mexico
¿Sabías que el ejercicio puede ser un aliado poderoso en la gestión de enfermedades autoinmunes? En este webinar, exploraremos cómo el deporte puede ayudar a mejorar la calidad de vida.

Únase a nosotros el 5 de junio para una presentación y discusión con la Dra. Araceli Reyes Cuayahuitl. Haga clic aquí para registrarse: https://us02web.zoom.us/webinar/register/WN_DeOIgA_qTemWu61Y3RWVJg

Temas a cubrir:
• Breve introducción a las enfermedades desmielinizantes
• Síntomas físicos comunes
• Importancia de la actividad física en general
• Evidencia científica del impacto del ejercicio en enfermedades desmielinizantes
• Tipos de ejercicio recomendados

¿Qué esperar en el webinar?
• Información basada en evidencia científica
• Oportunidad para hacer preguntas e interactuar con expertos

Este programa es posible gracias al apoyo de Amgen.

TSF's Washington DC Patient Day
2025-06-08 11:00 - 17:00 (America/New_York) | Leavey Center, 560 Tondorf Road, Washington, DC, 20057, United States
TSF is coming to the DMV area!
Are you an NMOSD/MOGAD patient, caregiver, clinician, nurse, researcher and/or advocate in the Washington D.C./Baltimore area? You’re invited to our event on Sunday, June 8th, at 11 AM at the Georgetown University Conference Center.
Join us for a day of education, community, and fun to:

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 in-person event is free and lunch will be served. We can’t wait to see you in the capital of the United States!
The Sumaira Foundation team

Human Collective Project | South Africa
2025-04-29 18:00 - 19:00, 2025-03-26 19:00 - 20:00 (Africa/Johannesburg)

MOGADについての理解と 臨床試験への患者参加の 重要性
2025-04-26 14:00 - 15:00 (Asia/Tokyo) | Virtual: Japan, Japan
MOGAD啓発月間を記念し、Sumaira Foundation、MSCabin、NPO法人日本視神経脊髄炎患者会が、藤原一男先生と毛塚剛司先生による特別ウェビナーを開催します。 4 月 26 日午後 2 時から、MOG抗体疾患と臨床試験への患者参加の重要性について話し合うインタラクティブ プログラムにご参加ください。 セミナーのライブ視聴者は、講師の先生方へ質問することができます。 セミナーアーカイブは、後日 TSF YouTube チャンネルで視聴できます。 （チャンネル登録が必要です）

TSF's San Francisco Patient Day for NMOSD & MOGAD
2025-03-29 11:00 - 17:00 (America/Los_Angeles) | Stanford University – Cardinal Hall, 505 Broadway, Redwood City, 94063, United States
TSF is coming to San Francisco!
Are you an NMOSD/MOGAD patient, caregiver, clinician, nurse, researcher and/or advocate in the Bay Area? You’re invited to our event on Saturday, March 29th at 11 AM at Stanford University – Cardinal Hall, hosted in collaboration with the neuroimmunology teams at Stanford and UCSF.
Join us for a day of education, community and fun to:

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 in-person event is free and lunch will be served. We can’t wait to see you in San Francisco.
The Sumaira Foundation team

Il progetto collettivo umano (HCP) | Italia Per pazienti adulti
2025-03-28 17:30 - 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.

Immunizations for the Immunocompromised
2025-03-25 19:00 - 20:00 (America/New_York) | Virtual: United States, United States
Vaccines play a crucial role in protecting immunocompromised patients, as their weakened immune systems make them more vulnerable to infections. Vaccines also help prevent the spread of contagious diseases to others. For immunocompromised patients, the risk of severe illness or complications from diseases such as flu, pneumonia or COVID-19 is significantly higher, making vaccination a key preventative measure. Join us for an insightful discussion on March 25th about immunizations for the immunocompromised led by Dr. Elias Sotirchos, neuroimmunologist and Assistant Professor of Neurology at The Johns Hopkins University School of Medicine. Attendees joining live will have the opportunity to ask Dr. Sotirchos questions about vaccines and immunizations in real time. This program is made possible with support from Alexion.

La gestion de la fatigue dans la NMOSD et la MOGAD
2025-03-24 20:00 - 21:00 (Europe/Paris) | Virtual: France, France
La fatigue et la fatigabilité touchent toutes les personnes souffrant de NMOSD et de MOGAD. Cela reste la première cause de baisse de la qualité de vie mais est assez difficile à gérer. Imprévisible, durable, la fatigue n’est pas gérable avec une pilule miracle. Pour aborder ce sujet nous serons en compagnie du docteur Nathalie Moreau, Cheffe de service de l’unité de Médecine Physique et de Réadaptation de l’Hôpital Léopold Bellan à Paris et de Véronique Carrette, sophrologue et hypnothérapeute. Vous pourrez poser vos questions à nos intervenantes. Ce programme est rendu possible grâce au soutien d’Amgen.

El proyecto colectivo humano (HCP) | Español
2025-03-20 19:00 - 20:00 (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.

NMOSD in sub-Saharan Africa
2025-03-17 18:00 - 19:30 (Africa/Bangui) | Virtual: South Africa, South Africa
In honor of NMO Awareness Month 2025, TSF is excited to present “NMOSD in Sub-Saharan Africa,” a live event exploring the landscape of NMOSD and other rare neuroimmunological disorders.
Join us on Monday, March 17th, for an exclusive webinar featuring Dr. Mashina Chomba (Zambia), Dr. Fiifi Duodu (Ghana), Dr. Pearl Thomas (South Africa), and Dr. Cynthia Wendo (Kenya). The experts will provide insights and answer questions about the prevalence and incidence of NMOSD, diagnostics, available treatments, immunizations, clinical trials, and more. We invite patients, caregivers, clinicians, researchers, and advocates from around the world to attend.
Live participants will have the opportunity to ask questions directly to the experts. The webinar will be recorded and made available for replay on TSF’s YouTube channel.
Registration is required.

Navigating the Transition from Pediatric to Adult Neuroimmunology Care
2025-03-06 14:00 - 15:30 (America/New_York) | Virtual: United States, United States
We’re calling pediatric patients and their parents/caregivers to join us on March 6th for a special webinar featuring experts from Children’s National Hospital and George Washington University.
This webinar will provide an overview of the transition from pediatric to adult medical care, featuring insights from a pediatric neurologist, social worker, and a neuropsychologist.
Topics will include maintaining continuity of care, managing complex medical conditions, self-advocacy in healthcare settings, and addressing social and emotional considerations. The discussion aims to support patients, families, and caregivers in navigating this important transition effectively.

Le Projet Collectif Humain (HCP) | Français
2025-03-03 14:00 - 15:00 (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.
