The Sumaira Foundation
@TheSumairaFDN
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Raising awareness of rare neuroimmune disorders, building community, supporting research and advocating on behalf of patients globally.
Boston, MA
Joined November 2014
🇦🇺 Pregnant Sydney mum left paralysed after diagnosed with rare illness (#NMOSD) by doctors https://t.co/SFer0wgjK5
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🇨🇦 Meet the experts at Toronto Patient Day for Rare Neuroinflammatory Disorders on November 8th! If you or your loved one are impacted by #AE, #MG, #MOGAD or #NMOSD, join us for a day of education, impact and connection. To register, visit https://t.co/PREKByGYJ3
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🇮🇹 Diamo il benvenuto ad Alice, nuova ambasciatrice italiana di TSF! Dopo la diagnosi di #MOGAD del figlio Tito, ha trasformato il dolore in impegno. Psicologa e madre, porta sostegno e speranza a chi affronta malattie neurologiche rare.
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En 1894, le neurologue français Eugène Devic et son élève Fernand Gault ont décrit une maladie nerveuse rare affectant la moelle épinière et les nerfs optiques, ressemblant à la SEP. Aujourd'hui, cette affection est appelée maladie de Devic ou #NMOSD.
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October 24th is Dr. Eugène Devic’s birthday! In 1894, Dr. Eugène Devic and his student, Ferdinand Gault, described a rare nervous condition. that affected the spinal cord and optic nerves that resembled MS. Today this disorder is referred to as Devic’s disease or #NMOSD.
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🇧🇪 🇳🇱 Bent u of kent u iemand die getroffen is door MOGAD? U bent uitgenodigd voor een webinar over #MOGAD en klinische studies op 18 november met Prof. Dr. Barbara Willekens en Prof. Dr. Guy Laurys https://t.co/WPujEU8y5g
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🇮🇹 Incontra gli esperti a Roma sabato 22 novembre! TSF Italia invita pazienti con #EA, #MG, #MOGAD, #NMOSD, caregiver e medici a una giornata di formazione, incontro e divertimento. https://t.co/S6MPOW6wme
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Putting the engagement in engagement award 😎 TSF is thrilled to be at the 2025 @PCORI Annual Meeting in Washington DC 🥰
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YOU are worth fighting for🌺 Patients inspire everything we do that’s why we created this collection, to remind YOU (and the world) that you're worth fighting for, no matter the circumstances. Shop now & wear the message loud! 🤍 https://t.co/ETGLH184uo 🖤 https://t.co/ShT7RhTFFo
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🗞️After a cold in 2015, Brian was misdiagnosed with #NMOSD & told he had ~7 years to live. Later, he learned he actually had #MOGAD, a rare but non-fatal autoimmune disease. Now, he’s an advocate fighting for faster diagnoses, better care & awareness. https://t.co/EHV0TDksRt
inquirer.com
Brian Dawson's life changed when he received a misdiagnosis of neuromyelitis optica (NMO). As a patient advocate, he's now helping tackle barriers faced by rare disease patients in Pennsylvania.
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🇦🇩🇵🇹🇪🇸 Roberto Pons es el nuevo embajador de TSF en Iberia. Tras vivir de cerca el diagnóstico de su hermana con #NMOSD, encontró esperanza en las historias de TSF. Hoy, quiere devolver esa fuerza y dar voz a quienes más lo necesitan. ¡Bienvenido!
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TSF’s 2025 Global Rare Trailblazer Award recognized Prof. Vanda Lennon in Barcelona during ECTRIMS for her groundbreaking neuroimmunology research. Her discovery of key autoantibodies has advanced diagnosis & care for autoimmune neurological disorders. https://t.co/8pqag4f6jA
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🇮🇹 TSF is proud to endorse the upcoming "Evolving Spectrum of Neuroimmunological Disorders" meeting featuring experts from all over the world in Verona on November 10th organized by @SaraMariottoMD. To register, visit https://t.co/uGOtWp19qF
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🇨🇦 Join us on 11/5 for a patient education program about how to navigate life with #NMOSD in Canada featuring Dr. Dalia Rotstein. https://t.co/CAMZqIwskI
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🇺🇸 Diagnosed with #NMOSD? Join a 60-min paid interview for market research🧠 Get $100 if you qualify (Must be 18+, in the U.S., and diagnosed with NMOSD (AQP4+/-)). Apply: https://t.co/ZRlXSe0eJO 📞 Include your phone & time zone.
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🇵🇪 ¡Bienvenida Mily, nueva Embajadora TSF del Perú! Diagnosticada con #NMOSD en 2023, superó la parálisis y hoy camina de nuevo. Ahora quiere apoyar a otros pacientes en Perú para que nunca se sientan solos ni pierdan la fe.
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🇬🇷 Σας επηρεάζει η MOGAD; Σας προσκαλούμε σε webinar τη Δευτέρα 10/11, 18:00 (EET) με θέμα συμπτώματα, θεραπείες & κλινικές δοκιμές. Ομιλητές: Γρηγοριάδης & Ευαγγελοπούλου. Εγγρα��ή: https://t.co/xUFJBXcVgI
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🇲🇽 Día Internacional de la Neuromielitis Óptica: debate #EM, #NMOSD y #MOGAD. Únete el 18/oct en CDMX para aprender, compartir y fortalecer nuestra comunidad. 📍Centro Cultural "El Rule" 10:30 h 📩 Regístrate vía QR. Info: contacto@caminemos.mx @josefloresunc
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Welcome Vanessa, TSF's 1st #CNSVasculitis Ambassador! A bilingual clinician, advocate and mom from Idaho, Vanessa brings passion, expertise and heart to the TSF community. She's ready to raise awareness and build connections in Idaho and beyond!
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Join us on October 18th for TSF's Seattle Patient Day for Rare Neuroinflammatory Disorders for a day of education, connection and impact! https://t.co/Rdb5HXk3C5 Meet the AE, CNS Vasculitis, MOGAD, neurosarcoidosis, NMOSD and SPS patient & caregiver panelists🦄 @ShuvroRoy
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