The Sumaira Foundation

When rare disease besties link up: Chicago edition 💃🏾🩷💃🏿🧡💃🏽💛 Kina Peppers, MD FACOG (Dr. Kina MD) Marion Jones

⌛ There's just one week left until the ECTRIMS Pre-Day in Copenhagen, which focuses on neuromyelitis optica spectrum disorder (NMOSD), myelin oligodendrocyte glycoprotein antibody disorder (MOGAD), and autoimmune encephalitis and immunotherapy complications. 🔊 Tune in to our latest podcast to learn more about NMOSD and MOGAD. In this two-part episode, host Brett Drummond of MStranslate speaks with Prof. Sara Mariotto of Università degli Studi di Verona in Italy and Prof. Kazuo Fujihara of Fukushima Medical University in Japan about the latest research on the pathogenesis of these diseases, diagnostic criteria, potential treatment approaches, and any learnings that may be translated to MS. 🎧 Listen to Part 1 here ➡️ Website: https://bit.ly/3AZH7Zl Spotify: https://spoti.fi/3XzQyHA Apple: https://apple.co/3ATI0lY 🎧 Listen to Part 2 here ➡️ Website: https://bit.ly/3ZkZbr2 Spotify: https://spoti.fi/3Zerur1 Apple: https://apple.co/3z9cekB #MS #MSResearch #NMOSD #MOGAD

T-4 days until TSF's 7th Annual Gala at Den Blaa Planet (National Aquarium of Denmark) in Copenhagen the night before #ECTRIMS kicks off! 🇩🇰 Join us for a memorable evening of celebration, entertainment, networking and giving back. 🎟️ https://lnkd.in/ekpXVpv9

Meet Crystal Boucon, TSF's Ambassador of Hawaii and Japan. Crystal's journey with MOGAD started in the fall of 2022 when she developed eye pain and was diagnosed with optic neuritis. Just a few months later in 2023, Crystal was officially diagnosed with MOGAD. In her Voices of MOG testimonial, Crystal shares details of her diagnostic journey, moments of feeling medically gaslit, relapses, the sacrifices associated with getting diagnosed with a rare disease, the importance of mental health and more. https://lnkd.in/eEmaSHkA

TSF is pleased to provide the Iranian neurology community around the globe with another lecture and case discussion on September 27th: NMOSD Treatments led by Prof. Romain Marignier, neuroimmunologist and NMOSD/MOGAD expert from France. https://lnkd.in/dq3MBZ3n We invite clinicians & researchers from all over the world to join this important discussion. This series is being organized by Prof. Mohammad Ali Sahraian (Tehran University of Medical Sciences), Dr. Sara Samadzadeh (Charité Universitätsmedizin Berlin) and Dr. Masoud Majed (Keck School of Medicine of USC). The Sumaira Foundation France

🇦🇹 Lernen Sie Christophe kennen, den ersten Botschafter von TSF in Österreich. Als bei der Verlobten von Christoph im Januar 2024 NMOSD diagnostiziert wurde, stellte er schnell fest, dass es in Österreich noch an Austauschmöglichkeiten für Betroffene und deren Angehörige mangelt. Daraufhin ergriff er die Initiative und gründete eine Selbsthilfegruppe in Österreich, mit dem Ziel, die Unterstützungsangebote für Patient:innen und Angehörige weiter auszubauen – damit war die erste und einzige NMOSD-Selbsthilfegruppe in Österreich gegründet. Beruflich arbeitet Christoph mit Arbeitgebern zusammen, um Pensionspläne zu erstellen und die finanzielle Zukunft der Mitarbeiter seiner Kunden zu sichern. Er ist sich sehr bewusst, wie eine Diagnose wie NMOSD oder MOGAD selbst die besten Pläne durchkreuzen kann. Christoph wird Patient:innen und Angehörige dabei unterstützen, Stabilität zu finden, damit sie ihr Leben auf positive Weise fortsetzen können. Denn gemeinsam sind wir stark Christoph spricht fließend Deutsch und Englisch. Willkommen, Christoph!

TSF’s youngest advocate 🦄, Maya Moon, wishes you all a wonderful weekend! 🩷🧡💛

A Fundação Sumaira (TSF) tem a honra de anunciar uma nova parceria com a NMO Brasil Associação Brasileira de Pacientes de NMOSD para levar comunidade, educação e conscientização para pacientes e seus familiares que vivem com NMOSD no Brasil. Daniele Americano da NMO Brasil diz, “Estamos muito felizes e orgulhosos em informar que a NMO Brasil e a The Sumaira Foundation são parceiras na jornada pela NMO & MOGAD, Iluminando a escuridão da NMOSD e MOGAD juntas, chegaremos muito mais longe. Sigamos #TodosPelaCURANMO!” Leia o comunicado completo aqui: https://lnkd.in/dsYDPNwH

Sumaira Ahmed who champions global awareness for #NMOSD and #MOGAD will be taking the stage at the launch of our new report, Brain health - time matters. 🔜The event take place alongside ECTRIMS in Copenhagen on 19 September 2024, from 13:30-15:00 CET. Please see how to sign up in the comments. 🏹 Sumaira is the visionary Executive Director and founder of The Sumaira Foundation which is dedicated to creating communities of support for patients and their caregivers, funding research and patient advocacy. NMOSD is a rare autoimmune disease that affects 10 out of 1 million people? and is oftentimes misdiagnosed as multiple sclerosis. The cause is unknown and there is no cure. The launch of this report has been sponsored by Merck Healthcare KGaA and Alexion Pharma GmbH; they had no influence on the content of the launch event nor the report. The report has been sponsored by a grant from F-Hoffman-La Roche Ltd, which has had no control over the educational content of this activity. Grant funding has also been provided by the Multiple Sclerosis Society, which has contributed to the report as an author. Horizon, now part of Amgen, provided sponsorship for the development of this report and has had no control over the educational content.

You’re invited to join PREVAIL, a live, virtual event featuring an NMOSD specialist and a patient taking UPLIZNA on September 11. NMOSD specialist Barry Hendin, MD and NMOSD patient Michelle will lead the conversation. Register today: https://bit.ly/4dTCJJi UPLIZNA is a prescription medicine used to treat adults with neuromyelitis optica spectrum disorder (NMOSD) who are anti-aquaporin-4 (AQP4) antibody positive. Please see the Important Safety Information and Medication Guide at UPLIZNA.com.