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X-ORIGINAL-URL:https://www.sumairafoundation.org
X-WR-CALDESC:Events for The Sumaira Foundation
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DTSTART;TZID=America/New_York:20240330T100000
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SUMMARY:The Human Collective Project Global
DESCRIPTION: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. \nSince 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.
URL:https://www.sumairafoundation.org/event/the-human-collective-project-global/
LOCATION:Virtual: Global
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/03/092b008f-8852-4a95-aab3-9b3578c950f2.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240301T100000
DTEND;TZID=America/New_York:20240301T110000
DTSTAMP:20240229T141927Z
CREATED:20240220T202321Z
LAST-MODIFIED:20240229T141927Z
UID:10000165-1709287200-1709290800@www.sumairafoundation.org
SUMMARY:Myths & Facts - Family Planning Considerations for NMOSD & other rare neurological conditions
DESCRIPTION:To celebrate NMO Awareness Month 2024\, The Sumaira Foundation invites you to join an insightful discussion about an important topic: Family Planning. \nJoin us on March 1st for a live webinar featuring Dr. Ahmed Shatila who will share myths & facts about family planning in people living with NMOSD & other rare neuro-immunological conditions. Dr. Shatila will discuss contraception and other factors that are important for people to plan with their neurologists and obstetricians. He will talk about the implications of a relapse before or during pregnancy and how to approach certain scenarios. Dr Shatila will outline the benefits and risks of several medications and options for treatment scheduling\, symptom management\, and MRI preparation. Finally\, we’ll conclude with discussing the considerations for labor and breastfeeding. \nThis meeting will be conducted in English with Arabic subtitles. Attendees will have the opportunity to ask Dr. Shatila questions in real time. This webinar will be recorded and made available on TSF’s YouTube channel and global website. \nThis program is made possible with support from AstraZeneca.
URL:https://www.sumairafoundation.org/event/myths-facts-family-planning-considerations-for-nmosd-other-rare-neurological-conditions/
LOCATION:Virtual: Global
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2024/02/Ahmed-Shatila.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230602T150000
DTEND;TZID=America/New_York:20230602T160000
DTSTAMP:20230515T174248Z
CREATED:20230515T174248Z
LAST-MODIFIED:20230515T174248Z
UID:10000092-1685718000-1685721600@www.sumairafoundation.org
SUMMARY:Double sero-negative NMOSD
DESCRIPTION:Do you or your loved one continue to test negative for the AQP4 and MOG antibodies? You are not alone! \n  \nYou’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). \n  \nDr. 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. \n  \nThis educational event is made possible through a patient education grant from Horizon Therapeutics.
URL:https://www.sumairafoundation.org/event/double-sero-negative-nmosd/
LOCATION:Virtual: Global
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/05/Eoin-Flanagan.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230429T120000
DTEND;TZID=America/New_York:20230429T130000
DTSTAMP:20230424T185651Z
CREATED:20230131T163136Z
LAST-MODIFIED:20230424T185651Z
UID:10000062-1682769600-1682773200@www.sumairafoundation.org
SUMMARY:Cabaret for A Cause
DESCRIPTION:In celebration of NMOSD & MOGAD Awareness Months\, TSF is pleased to present “Cabaret for a Cause\,” a dance class taught by professional choreographers / show girls from a world-renowned cabaret in Paris\, France. \nEmma Castel and Deborah Lettieri will be teaching the class for both standing and seated attendees! \n100% of proceeds will be donated towards research for neuromyelitis optica spectrum disorder (NMOSD) and myelin oligodendrocyte glycoprotein antibody disorder (MOGAD).
URL:https://www.sumairafoundation.org/event/cabaret-for-a-cause/
LOCATION:Virtual: Global
CATEGORIES:TSF Events/Fundraisers
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/01/2023-Cabaret-for-a-Cause-2.0-Eventbrite-2.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230427T160000
DTEND;TZID=America/New_York:20230427T170000
DTSTAMP:20230411T204403Z
CREATED:20230411T200034Z
LAST-MODIFIED:20230411T204403Z
UID:10000086-1682611200-1682614800@www.sumairafoundation.org
SUMMARY:NMOSD y MOGAD\, Perlas en el Diagnóstico y Opciones para el Tratamiento
DESCRIPTION:Está invitado a asistir a la videoconferencia “NMOSD y MOGAD\, Perlas en el Diagnóstico y Opciones para el Tratamiento” el viernes 27 de abril a las 2:00 pm México / 4:00 pm Venezuela / 5:00 pm Argentina. Médicos especialistas de 3 diferentes países de Latinoamérica unen esfuerzos para abordar temas de interés común para todos. \n“Perlas en el Diagnóstico Diferencial (EM\, NMOSD\, MOGAD)”\, Dr. Edgar Carnero Contentti. \n“Tratamiento con Eculizumab\, Satralizumab\, Inebilizumab en NMO”\, Dra. Sarah Vargas. \n“Impactos Socioeconómicos de la Enfermedad y Acceso Entre Fronteras”\, Dr. José Flores Rivera. \nLos asistentes conectados a la videoconferencia tendrán la oportunidad de hacer preguntas a los tres doctores en tiempo real. Esta conferencia web se grabará y estará disponible para su reproducción\, tanto en la biblioteca multimedia\, como en el canal de YouTube de The Sumaira Foundation. \nEste evento educativo es posible gracias a una subvención para la educación del paciente de Horizon Therapeutics.
URL:https://www.sumairafoundation.org/event/nmosd-y-mogad-perlas-en-el-diagnostico-y-opciones-para-el-tratamiento/
LOCATION:Virtual: Global
CATEGORIES:From The Experts,TSF Programming
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/04/JFloresEContenttiSVargas.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230412T190000
DTEND;TZID=America/New_York:20230412T203000
DTSTAMP:20230316T151900Z
CREATED:20230312T140038Z
LAST-MODIFIED:20230316T151900Z
UID:10000076-1681326000-1681331400@www.sumairafoundation.org
SUMMARY:Meet the Author | Kyle Bryant\, "Shifting Into High Gear"
DESCRIPTION:TSF is pleased to invite you to an exclusive “Meet the Author” fireside chat between Sumaira and Kyle Bryant\, an author\, athlete\, speaker\, and spokesperson for Friedreich’s Ataxia Research Alliance (FARA). \n“Shifting Into High Gear” charts the course of Kyle’s transformation as he journeys on a recumbent tricycle across the United States in the throes of Friedreich’s ataxia\, a life-shortening and disabling disease. Full of humor and reflection\, it’s a heroic journey of a man driven to reframe the language of disease through action and service. \nAttendees will have the opportunity to ask Kyle questions in real-time. Registration is required.
URL:https://www.sumairafoundation.org/event/meet-the-author-kyle-bryant-shifting-into-high-gear/
LOCATION:Virtual: Global
CATEGORIES:Meet The Author
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/03/Meet-the-Author-March-2023-1.png
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BEGIN:VEVENT
DTSTART;TZID=Europe/Brussels:20230317T200000
DTEND;TZID=Europe/Brussels:20230317T210000
DTSTAMP:20230228T122223Z
CREATED:20230228T122223Z
LAST-MODIFIED:20230228T122223Z
UID:10000074-1679083200-1679086800@www.sumairafoundation.org
SUMMARY:NMOSD\, MOGAD en MS: Overeenkomsten en Verschillen
DESCRIPTION:Neem vrijdag 17 maart van 20.00-21.00 uur deel aan het allereerste Nederlandstalige webinar “In gesprek met deskundigen” (“From the Experts”). Dit webinar wordt georganiseerd door de Sumaira Foundation.\nDr Barbara Willekens zal spreken over overeenkomsten en verschillen tussen NMOSD\, MOGAD en MS. \nDr. Willekens is als neurologe verbonden aan het UZA\, het Universitair Ziekenhuis Antwerpen. Ze is gespecialiseerd in Multiple Sclerose (MS) en ontstekingsziekten van het zenuwstelsel. \nDeelnemers krijgen tijdens deze LIVE presentatie de mogelijkheid om vragen te stellen aan Dr. Willekens. Het webinar zal worden opgenomen en is later te bekijken via www.sumairafoundation.org en via het YouTubekanaal van de Sumaira Foundation. \nDit gratis webinar wordt mogelijk gemaakt door subsidie van het “patient education grant” programma van Horizon Therapeutics.
URL:https://www.sumairafoundation.org/event/nmosd-mogad-en-ms-overeenkomsten-en-verschillen/
LOCATION:Virtual: Global
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/02/Barbara-Willekens.png
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