The Sumaira Foundation

2° Giornata dedicata ai pazienti con NMOSD e MOGAD - Verona
2024-12-07 11:00 - 17:00 (Europe/Rome) | Crowne Plaza Verona – Fiera, 16 Via Belgio 37135, Verona, Italy
TSF è lieta di invitare tutti i pazienti italiani con NMOSD e MOGAD, i loro caregivers, ed i medici interessati a queste patologie a partecipare a questa giornata di formazione, unione e divertimento.
In collaborazione con la Dr.ssa Sara Mariotto dell’ Università di Verona, The Sumaira Foundation è lieta di invitarvi alla 2° Giornata per pazienti, caregivers e clinici dedicata a NMOSD e MOGAD.
Questo evento a libera iscrizione vi permetterà di:

Incontrare pazienti italiani con NMOSD e MOGAD, i loro caregivers ed i clinici esperti di queste patologie

Porre domande agli esperti in diretta relative alla gestione dei sintomi, le terapie, le comorbidità e molto altro

Aggiornarvi in merito alle ultime ricerche scientifiche con l’aiuto di medici esperti italiani

Fare rete e instaurare connessioni con la comunità locale dedicata a NMOSD e MOGAD

Il pranzo e il calore di TSF sono inclusi!
Non vediamo l’ora di incontrarvi!
TSF Italia

TSF Plauderstunde | HCP Germany
2024-12-11 19:30 - 20:30, 2025-01-08 19:30 - 20:30, 2025-02-12 19:30 - 20:30 (Europe/Amsterdam) | Virtual: Germany, Germany
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.

TSF's Human Collective Project Meetings
2024-12-12 20:00 - 21:00, 2025-01-09 20:00 - 21:00, 2025-03-13 20:00 - 21:00, 2025-04-10 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.

Human Collective Project | South Africa
2024-12-17 18:00 - 19:00, 2025-01-28 18:00 - 19:00, 2025-03-26 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.

Le Projet Collectif Humain (HCP) | Français
2024-12-19 20:00 - 21:00, 2025-02-03 14:00 - 15:00, 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.

다발성경화증(MS), 시신경척수염(NMOSD), 모그항체질환(MOGAD) 간의 유사점과 차이점을 이해합니다
2025-01-21 09:00 - 10:00 (Asia/Seoul) | Virtual: Korea
TSF 최초의 국내 환자교육 웨비나에 여러분을 초대합니다.
1월 21일 화요일 오전 9시에 NMOSD와 MOGAD 전문가 김호진 박사가 출연하여 MOGAD, MS 및 NMOSD 간의 유사점과 차이점을 논의하는 독점 프로그램에 참여하세요.
참석자들은 김 박사에게 질문할 기회를 갖게 됩니다. 이 웹 세미나는 녹화되어 TSF의 YouTube 채널에서 재생할 수 있습니다.
등록하려면 https://us02web.zoom.us/webinar/register/WN_7G2vm1JvTJeRgyB0cLrGMQ를 방문하세요.

LES TROUBLES DU SOMMEIL : THÉORIE ET PRATIQUE POUR MIEUX DORMIR
2025-01-29 20:00 - 21:00 (Europe/Paris) | Virtual: Global
Les troubles du sommeil sont courants dans les maladies neurologiques. La NMO et la MOGAD ne font pas exception. Que ce soit les troubles de l’endormissement, les réveils, le sommeil peu réparateur, les troubles sont variés et difficiles de s’en débarrasser.
En compagnie de Véronique Carrette, sophrologue et hypnothérapeute, Bérengère et Fatiha, ambassadrices TSF, nous les évoquerons mais surtout nous échangerons des trucs et astuces et des moyens d’améliorer la qualité de son sommeil. Retrouvez-nous en ligne ce mercredi 29 janvier à 20 heures. Vous pourrez poser toutes vos questions.

Managing Incontinence with Neuroimmune Disorders
2025-01-31 11:00 - 12:00 (America/New_York) | Virtual: Global
Join us on December 20th for TSF’s final webinar of 2024: Managing Incontinence with Neuroimmune Disorders featuring Dr. Raveen Syan, Urologist and Assistant Professor of Clinical Urology at The University of Miami.
Dr. Syan will discuss urinary, bowel and sexual dysfunction in the setting of neuroimmune conditions. Attendees joining the live program will have the opportunity to ask Dr. Raveen questions in real time. This webinar will be recorded and available for replay on TSF’s YouTube channel.
This program is made possible with support from Amgen.

Il progetto collettivo umano (HCP) | Italia Per pazienti adulti
2025-01-31 17:30 - 19:30, 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.

Tratamientos para MOGAD
2025-02-03 18:00 - 19:00 (America/Bogota) | Virtual: Global
Únase a nosotros el 3 de febrero para una presentación en vivo y una discusión sobre las opciones de tratamiento para pacientes de MOGAD en América Latina.

Para registrarse, visite: https://us02web.zoom.us/webinar/register/WN_hLhettqCQQGgi1nt5Lf68A

Los asistentes tendrán la oportunidad de hacer preguntas a los expertos. 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.

TSF's Human Collective Project Meetings | Black History Month
2025-02-13 20:00 - 21:00 (America/New_York) | Virtual: United States, United States
Happy Black History Month! Let’s get together for our monthly call to catch up, share stories, and keep building a supportive space for our unique community. This is a safe place for patients, caregivers, and anyone else affected by NMOSD, MOGAD, and other rare Neuroimmune disorders.
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.

Human Collective Project | South Africa
2025-02-25 19:00 - 20:00 (Africa/Johannesburg) | Virtual: South Africa, South Africa

Breaking Barriers in Neuroimmune Disorders
2025-02-25 19:00 - 20:30 (America/New_York) | Virtual: United States, United States
You’re invited to a special event during Black History Month featuring 2 ‘greats’ in neuroimmunology!
Join us on February 25th for a fireside chat between Dr. Mitzi Joi Williams, a celebrated neuroimmunologist, and Dr. Kina Peppers, an OB/GYN, author and NMOSD patient.
During this exclusive program, Dr. Williams and Dr. Peppers will discuss a variety of topics including systemic health equity challenges, the achievements of Black doctors and researchers in neuroimmunology, the prevalence of MS, NMOSD, and MOGAD in the Black community, the importance of patient advocacy, research, clinical trials, cultural competency for healthcare providers and calls to action for empowerment.
Live attendees will have the opportunity to ask questions in real time. This webinar will be recorded and made available for replay on TSF’s YouTube channel.

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.

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.

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.

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.

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.

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
