The Sumaira Foundation

Coaching Klatch: Pain vs. Suffering
2023-08-05 10:00 - 11:00 (America/New_York) | Virtual: United States, United States
“Coaching Klatch: Moving You Forward” is a 3-part program designed to bring patients and caregivers together in a supportive community to:

learn & apply coaching concepts
acquire tools to strengthen self-advocacy
Enhance quality of day-to-day lived experiences
move forward in your life despite living with a rare disease

Led by Dr. Maggie Kang*, this 3-part coaching program is virtual and free of charge to patients and caregivers, no matter where in the world you are or what your diagnosis is!

Join us for our upcoming sessions:

Session 1 | “Pain vs. Suffering” – Saturday, August 5th at 10 AM EST / 4 PM CET / 7:30 PM IST
Session 2 | “A New Way to Think About Change” – Saturday, September 9th at 10 AM EST / 4 PM CET / 7:30 PM IST
Session 3 | “How to Keep Medical Information Organized & Be Your Best Advocate in Healthcare” – Saturday, October 14th at 10 AM EST / 4 PM CET / 7:30 PM IST

To register, visit https://tinyurl.com/TSFCoachingKlatch

*Dr. Maggie Kang is a life coach, speaker, rare disease advocate and physician. Dr. Kang became an advocate for rare diseases after her then 9-year old daughter was diagnosed with neuromyelitis optica spectrum disorder (NMOSD) in 2018.

TSF's Human Collective Project Meetings
2023-08-03 20:00 - 21:00, 2023-07-20 20:00 - 21:00, 2023-07-06 20:00 - 21:00, 2023-06-29 20:00 - 21:00, 2023-06-08 20:00 - 21:00, 2023-05-25 20:00 - 21:00, 2023-05-11 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.

HCP Italia
2023-08-01 17:30 - 18:30, 2023-07-04 17:30 - 18:30, 2023-06-06 17:30 - 18:30 (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.

NMOSD Sieronegativa
2023-07-27 17:00 - 18:00 (Europe/Rome) | Virtual: Italy, Italy
Partecipa al nostro prossimo Webinar dal titolo: NMOSD sieronegativa – giovedì 27 luglio alle 17.00 con la dr. Elia Sechi, neurologo presso l’Università degli Studi di Sassari.
Chi parteciperà di persona potrà porre le proprie domande alla dr. Sechi. Il webinar verrà registrato e lo troverete sul canale YouTube della Sumaira Foundation (TSF), su Facebook e tra i video del sito TSF.
L’evento è supportato da Horizon Therapeutics.

HCP South Africa
2023-07-25 18:00 - 19:00, 2023-06-27 18:00 - 19:00, 2023-05-30 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 Southern California Patient Day for NMOSD & MOGAD
2023-07-22 11:00 - 18:00 (America/Los_Angeles) | UCLA Meyer and Renee Luskin Conference Center, 425 Westwood Plaza, Los Angeles, CA, 90095, United States
The Sumaira Foundation is pleased to invite you to TSF’s Southern California Patient Day, a special day dedicated to NMOSD & MOGAD patients, caregivers and clinicians.
Join us for a day of education, community, and fun where you’ll

Meet local NMOSD & MOGAD patients, caregivers and clinicians from Southern California
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

Le Projet Collectif Humain
2023-07-21 20:00 - 21:00, 2023-06-17 15:00 - 16:00, 2023-05-19 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.

TSF Plauderstunde | HCP Germany
2023-07-12 19:30 - 20:30, 2023-06-14 19:30 - 20:30, 2023-05-10 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.

Het Human Collective Project
2023-06-30 19:00 - 20:00, 2023-05-16 19:00 - 20:00 (Europe/Amsterdam) | Virtual: Amsterdam, Netherlands
Op dinsdag 16 mei om 19:00 organiseert de Sumaira Foundation de eerste Nederlands en Vlaamse online bijeenkomst voor mensen met NMOSD of MOGAD en hun familieleden en/of dierbaren.

U bent van harte welkom om deel te nemen en ervaringen uit te wisselen en elkaar te ondersteunen in een veilige omgeving.

Aanmelden voor deze bijeenkomst kan via: ZOOM

Trial clinici per i pazienti con MOGAD ed importanza della partecipazione dei pazienti
2023-06-27 17:00 - 18:00 (Europe/Rome) | Virtual: Italy, Italy
Partecipa al nostro prossimo Webinar dal titolo: MOGAD: importanza della partecipazione dei pazienti ai trial clinici – martedì 27 giugno alle 17.00 con la dr.ssa Sara Mariotto, neurologa presso l’Università di Verona.
La dr.ssa Mariotto presenterà le ultime novità in merito ai trial clinici in corso in Italia per i pazienti con MOGAD. Discuteremo l’importanza della partecipazione dei pazienti alla ricerca clinica e la strategia di sviluppo di nuove terapie.
Chi parteciperà di persona potrà porre le proprie domande alla dr. ssa Mariotto. Il webinar verrà registrato e lo troverete sul canale YouTube della Sumaira Foundation (TSF), su Facebook e tra i video del sito TSF.
L’evento è supportato da UCB.

Sports Pour Tous
2023-06-23 20:00 - 21:00 (Europe/Paris) | Virtual: France, France
Rejoignez-nous pour des échanges sur le sport adapté avec Mathieu Jousse, sportif et professionnel en sports adaptés et Emmanuel Rouchaussée,mal voyant profond et sportif amateur en sports adaptés , autour de 3 axes principaux : les différents sports que l’on peut adapter et comment, les bienfaits de la pratique du sport et les associations et sites de sports adaptés en France et en Belgique.
Retrouvez-nous le 23 juin 2023 à 20 heures.
Cet événement est soutenu par les subventions d’Horizon Therapeutics et Alexion pour l’éducation des patients.

TSF’s Human Collective Project | Danmark
2023-06-07 19:00 - 20:00 (Europe/Amsterdam) | Virtual: Danmark, Denmark

TSF's Human Collective Project | Global Meetings
2023-06-03 10:00 - 11:00 (America/New_York) | Virtual: United States, United States
We’re excited to bring NMOSD/MOGAD patients + caregivers from around the globe together another global support group meeting!
These meetings are a safe space led by the community for the community. No judgment, only love & support. (This meeting will be conducted in English)
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.

Double sero-negative NMOSD
2023-06-02 15:00 - 16:00 (America/New_York) | Virtual: Global
Do you or your loved one continue to test negative for the AQP4 and MOG antibodies? You are not alone!

You’re invited to attend “Double sero-negative NMOSD” on Friday, June 2nd at 12 PM PST / 3PM EST / 9 PM CET featuring Dr. Eoin Flanagan, Professor of Neurology, Chair of the Division of Multiple Sclerosis and Autoimmune Neurology, Director of the Autoimmune Neurology Fellowship and Consultant in the departments of Neurology and Laboratory Medicine and Pathology at the Mayo Clinic (Rochester, MN).

Dr. Flanagan will be in conversation with Sumaira, presenting live from the CMSC 2023 Annual Meeting in Aurora, CO. Live attendees will have the opportunity to ask Dr. Flanagan questions in real time. This webinar will be recorded and available for replay on TSF’s Multimedia Library and YouTube channel.

This educational event is made possible through a patient education grant from Horizon Therapeutics.

TSF's Human Collective Project | Global Meetings
2023-05-06 10:00 - 11:00 (America/New_York)
These meetings are a safe space led by the community for the community. No judgment; only love & support. (This meeting will be conducted in English)
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.
