The Sumaira Foundation

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.

Le Projet Collectif Humain
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.

HCP South Africa
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.

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

TSF’s Human Collective Project | Danmark
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.

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
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.

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's Human Collective Project Meetings
2024-05-09 20:00 - 21:00, 2024-06-13 20:00 - 21:00, 2024-07-11 20:00 - 21:00, 2024-08-08 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.

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, 2024-07-30 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.

10 Years of TSF
2024-07-18 19:00 - 23:00 (America/New_York) | Nikolai’s Roof, 255 Courtland Street, Atlana, GA, 30303, United States
You’re invited to celebrate 10 years of TSF!
Join us on Thursday, July 18th at 7:00 PM for an evening of music, dancing, food/drinks and nostalgia as we commemorate a decade of impact while raising funds to support NMOSD and MOGAD research around the world. This social event will take place at Nikolai’s Roof (at Hilton Atlanta) the night before AAN’s Summer Conference dedicated to Autoimmune Neurology commences.
Don’t miss out on this special evening with friends, colleagues and supporters from all over the globe. Let’s raise a toast to the next ten years of rare disease advocacy and research!
Early-bird tickets are available until June 30, 2024. Prices go up on July 1st.
See you soon
The Sumaira Foundation

TSF's Atlanta Patient Day for NMOSD & MOGAD
2024-07-21 11:00 - 17:00 (America/New_York) | Emory Brain Health Center, 12 Executive Park Dr NE, Atlana, 30329, United States
Are you an NMOSD/MOGAD patient, caregiver, clinician, nurse, researcher and/or advocate in or around Georgia? You’re invited to our special day on Sunday, July 21st at 11 AM at Emory Brain Health Center.
In collaboration with Dr. Grace Gombolay & Dr. Spencer Hutto (Emory) and Dr. Mitzi Joi Williams (Joi Life Wellness), The Sumaira Foundation is pleased to invite you to TSF’s Atlanta Patient Day, a special day dedicated to NMOSD & MOGAD patients, caregivers, clinicians and researchers.
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 is a free event and lunch will be served. We’re excited to see you in Atlanta!
The Sumaira Foundation team

Iranian Insights: Treatment Strategy for MOGAD: Acute & Maintenance Therapy
2024-07-26 18:30 - 19:30 (Asia/Tehran) | Virtual: Global
TSF is pleased to provide the Iranian neurology community around the globe with another lecture and case discussion: Treatment Strategy for MOGAD: Acute & Maintenance Therapy led by Dr. Sara Mariotto, neuroimmunologist and global NMOSD/MOGAD expert.
We invite clinicians & researchers from all over the world to join this important discussion.
This series is being organized by Dr. Sara Samadzadeh (Charité Universitätsmedizin Berlin), Dr. Masoud Majed (Keck School of Medicine of USC), and Dr. Mohammad Ali Sahraian ( Tehran University of Medical Sciences).

TSF Plauderstunde | HCP Germany
2024-08-14 19:30 - 20:30 (Europe/Amsterdam) | Virtual: Germany, Germany

HCP Turkey
2024-08-20 15:00 - 16:00 (Europe/Istanbul) | virtual: Turkey, Turkey
Ağustos nmo-sd/mog-ad toplantimiza tüm NMO-sd hastalarini ve aile fertleri davetlidir.
zoom toplantimizda dr.Rabia ve dr.Meral Nmo ile ilgili sorulari cevaplayacaktir.
aşağıdaki belirtilmis olan linkten kaydinizi oluşturabilirsiniz

saygılarımla
Sumaira Türkiye
Fatih Şen

Tratamientos para el NMOSD
2024-08-21 18:00 - 19:00 (America/Bogota) | Virtual: Colombia, Colombia
El jueves 21 de agosto a las 6pm hora Colombia, el Dr Carlos Navas de Colombia y el Dr Edgar Carnero de Argentina nos contarán los tratamientos para NMOSD. ¡¡Acompáñanos!!

Verständnis von MOGAD und der Bedeutung der Patientenbeteiligung an klinischen Studien
2024-08-23 14:00 - 15:00 (America/New_York)
TSF Deutschland lädt deutschsprachige MOGAD-Patienten, Pflegekräfte und Kliniker ein, an unserem kommenden Live-Webinar “Verständnis von MOGAD und der Bedeutung der Patientenbeteiligung an klinischen Studien – mit Professor Friedemann Paul, Neuroimmunologe an der Charité – Universitätsmedizin Berlin” teilzunehmen.
Live-Teilnehmer haben die Möglichkeit, Prof. Paul in Echtzeit Fragen zu stellen.
Diese Sitzung wird aufgezeichnet und kann danach auf dem YouTube-Kanal von TSF wiedergegeben werden.
Dieses Programm wurde mit Unterstützung von UCB ermöglicht.

TSF's Exclusive TEEN & Young Adult HCP Meeting
2024-08-29 19:00 - 20:00 (America/New_York) | Virtual: Global
Are you a teen or young adult affected by rare neuroimmune disorders such as NMOSD or MOGAD? All are welcome between the ages of 13-25.
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.
