The Sumaira Foundation

Understanding Clinical Trials for MOGAD & the Importance of Patient Participation
2023-01-06 09:00 - 10:00 (America/New_York) | Virtual: Danmark, Denmark
You’re invited to join TSF’s 1st live webinar of 2023 – Understanding Clinical Trials for MOGAD & the Importance of Patient Participation – on Friday, January 6th featuring Dr. Michael Levy who will share updates about ongoing clinical trials for patients living with MOGAD. Additionally, we will discuss the importance and value of patient participation in clinical research and trials for novel therapies. Attendees will have the opportunity to ask Dr. Levy questions in real time.
This webinar will be recorded and available for replay on TSF’s Facebook and YouTube libraries.
This webinar is sponsored by UCB.

TSF's Human Collective Project Meetings
2023-01-05 20:00 - 21:00, 2022-12-22 20:00 - 21:00 | Virtual: Danmark, Denmark
The Human Collective Project (HCP) is TSF’s support group meeting offered to anyone who has been affected/impacted by NMOSD/MOG-AD. The program came into existence during the height of the COVID-19 pandemic in 2020, when most NMOSD/MOG-AD 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/MOG-AD 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.

SM, NMOSD e MOGAD: Somiglianze e Differenze
2022-12-14 12:00 - 13:30 | Virtual: Danmark, Denmark
Unisciti a noi mercoledì 14 dicembre per il 1° webinar italiano della Fondazione Sumaira con la dott.ssa Sara Mariotto, neurologa ed esperta di NMOSD/MOGAD che discuterà e risponderà alle domande sulle somiglianze e le differenze tra NMOSD e MOGAD.
I partecipanti avranno l’opportunità di porre domande alla Dr. ssa Mariotto dal vivo ed in italiano. Il webinar sarà registrato e sarà disponibile per essere rivisto sul canale YouTube e Facebook di TSF.
Questo evento è reso possibile da una sponsorizzazione per la formazione ed il supporto ai pazienti di Horizon Therapeutics.

TSF Book Club | "Being Mortal" by Atul Gawande
2022-12-13 20:00 - 21:00 | Virtual: Danmark, Denmark
You’re invited to join TSF’s next book club meeting on November 29th, during which we’ll discuss “Being Mortal” by Dr. Atul Gawande.
From Atul Gawande, a book that has the potential to change medicine – and lives.

Through eye-opening research and gripping stories of his own patients and family, Gawande reveals the suffering this dynamic has produced. Nursing homes, devoted above all to safety, battle with residents over the food they can eat and the choices they are allowed to make. Doctors, uncomfortable discussing patients’ anxieties about death, fall back on false hopes and treatments that shorten lives instead of improving them. And families go along with all of it.

SRNA Young Adults Group Meeting
2022-12-03 12:00 - 17:00 | Virtual: Danmark, Denmark
Join us for an online social hour hosted by Aidan M. for those in their 20’s and 30’s with ADEM, AFM, MOGAD, NMOSD, ON, or TM! Connect with others and discuss what it’s like living with a rare neuroimmune disorder during the transitions of young adulthood. Ask questions, share your stories, or just listen – everyone is welcome.
Please think of this as a virtual coffee hour, where we will have informal conversations and create community among younger folks with disorders under the SRNA umbrella. Come connect with others and discuss what it’s like living with a rare neuroimmune disorder. Ask questions, share your stories, or just listen – everyone is welcome.

NMOSD/MOGAD Global Support Group Meeting
2022-12-03 10:00 - 11:00
We are excited to launch TSF’s first-ever global Human Collective Project meeting! Join us on Saturday, December 3rd at 10 AM EST / 4 PM CET for a support group meeting with NMOSD/MOGAD patients and caregivers from all over the world.
This special monthly group will be hosted by, Candice Galvan, NMOSD Caregiver, Colorado Ambassador, and HCP Program Manager. This meeting will be conducted in English.
To register, visit https://tinyurl.com/TSFHCPglobal
