The Sumaira Foundation (TSF)
@thesumairafdn.bsky.social
TSF is a global nonprofit organization dedicated to raising awareness of rare neuroimmune conditions, building community, supporting research, advocating on behalf of patients. www.sumairafoundation.org
🇨🇦 Two months ago, we gathered in Montréal. Two months later, we’re still reflecting on the conversations, connections and community that made our Patient Day so special. Relive the day and explore the full recap: www.sumairafoundation.org/event-recap-...
¿Usted o un ser querido vive con #MOGAD? Vea nuestro webinar con el Dr. Edgar Carnero Contentti sobre avances en tratamiento y futuras opciones terapéuticas en Latinoamérica, moderado por Ernesto, Embajador de TSF en México. ▶️ youtu.be/lrSQLQH0rHU
MOGAD in LatAm
YouTube video by The Sumaira Foundation
youtu.be
🔬 Breaking barriers while advancing & improving care. TSF is proud to endorse this FREE workshop, Nov. 20–21 in Rome, bringing experts together across #MG, #AE, #NMOSD & #MOGAD to advance diagnosis, treatment & patient-centered care. 🇮🇹 medexlearning.com/product/brea...
FOMO from TSF Patient Days? We’ve got you! 🦄💗 Join us across the U.S. & Europe for FREE, education- and community-focused events connecting patients, care partners & advocates. 📍 MI 9/19 | Miami 9/26 | Lille 11/21 | LA 12/5 🎟️ Register: www.sumairafoundation.org/events/
We’re so proud of TSF Ambassador Patricia Redondo, caregiver to her mom living with #NMOSD, for presenting her Johns Hopkins research at the #AANSC Autoimmune Neurology Conference in Houston! 💗 A powerful moment where research, caregiving & advocacy came together. 🎉 @staceylclardy.bsky.social
Diagnosis Day is a date we never forget. 💗 It may change everything, but it doesn’t define what comes next. We find strength, community, purpose & hope. ✨ 📅 When was your diagnosis day? What’s one silver lining you’ve found? Share below. 🦄
Caregiving can be meaningful—but overwhelming, too. 💗 Join TSF Caregiver Ambassadors Maria & Trudie for a conversation on self-care, resilience and navigating the caregiving journey. Watch their presentation and remember: you are not alone. youtu.be/EobFSFEyGk0
Updates continue with neuro-ID and Dr Prashanth Ramachandran So many new things to learn! #AANANC @staceylclardy.bsky.social
🇮🇹 This month's infographic illustrates a study about how #MOGAD diagnostic criteria perform in real-world clinical settings in Italy. Read the patient-friendly summary here: www.sumairafoundation.org/summaries/re...
🇨🇴 La historia de Ingrid con #NMOSD nos recuerda que la vida puede cambiar en un instante- pero también nuestra fuerza. A pesar de la pérdida de visión, hospitalizaciones e incertidumbre, encontró luz, esperanza y resiliencia. www.sumairafoundation.org/la-historia-...
Hey Michiganders, we're coming to see you! If you or a loved one is living with #CIDP, #MG, #MOGAD, or #NMOSD, join us on Sept. 19 for a free Patient Day featuring expert talks, community, research updates and lunch. We can't wait to see you! 💙 www.eventbrite.com/e/1993976685...
🇬🇭 Meet Priscilla Ofeibea Larbi, TSF's newest Ambassador in Ghana! A fourth-year medical student at the University of Ghana, she's passionate about raising awareness of rare diseases, advancing advocacy, and amplifying patient voices. Welcome to TSF, Priscilla! 💗🧡💛
Join TSF & IPMSSG on Oct. 20, 2026, at SickKids for an exclusive evening with global leaders in neuroimmunology. Hear the latest adult & pediatric research, connect with experts and network above Toronto's skyline. 🎟️ Register: www.eventbrite.com/e/tsf-x-ipms...
🇹🇿 Meet Dr. Latifa Juma Sangali, TSF's first Ambassador in Tanzania! As a General Practitioner, she's passionate about improving awareness, early recognition and timely referral of rare neurological diseases. Welcome to the TSF community, Dr. Sangali!
The TSF Quarterly Newsletter is back and she's brighter than ever! Inspiring stories, research updates, advocacy wins, community highlights and more. Dive into the latest from the rare neuroimmune community. Read it here: view.flodesk.com/emails/6a024...
🌍 TSF is proud to be a Community Partner for @ECTRIMS Patient Community Day for the 3rd year in a row! Join us Oct. 23, 2026 in Toronto or virtually worldwide. 🌎 Translation services available! #ECTRIMS4ME #MOGAD #MS #NMOSD
In this month's #VoicesOfTSF, Dr. Ketevan Paposhvili shares the journey that inspired her commitment to advancing neuroimmunology in her native country, Georgia, and beyond. www.sumairafoundation.org/dr-ketevan-p...
Join us Oct. 21 for an exclusive evening on the global challenges in #NMOSD & #MOGAD featuring Dr. Kazuo Fujihara 🇯🇵, Dr. @SaraMariottoMD 🇮🇹 & Dr. Jacqueline Palace 🇬🇧, moderated by Dr. Dalia Rotstein 🇨🇦. 🎟️ Space is limited: www.tinyurl.com/NMOSDMOGAD2026
TSF's Rochester Patient Day was a day of education, connection and hope. Together, we're ensuring no one faces rare neuroinflammatory and/or related disorders alone. www.sumairafoundation.org/event-recap-...
🇦🇪 تعرّفوا على د. عزة محمود، سفيرة مؤسسة TSF في أبوظبي، الإمارات العربية المتحدة! طبيبة وباحثة شغوفة بعلم المناعة العصبية والدفاع عن المرضى، وتسعى إلى تعزيز الوعي بأمراض NMOSD وMOGAD والتهاب النخاع المستعرض، ودعم المرضى وعائلاتهم.
Living with #myastheniagravis can be overwhelming but you don't have to face it alone. 💙 Our new "What to Know About #MG" resource covers symptoms, diagnosis, treatment & daily living. Available in 28 languages! www.sumairafoundation.org/what-to-know...
sumairafoundation.org
🇮🇹 Le donne di TSF Italia ci sono riuscite ancora una volta! L'Italia si è illuminata di rosa per sensibilizzare e aumentare la consapevolezza sulla #NMOSD e sulla #MOGAD 🩷🧡💛 www.tiktok.com/@thesumairaf...
TikTok video by The Sumaira Foundation
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📞🧠 Not sure when to call your neurologist… or what to say? Join us May 28 at 6 PM PT / 9 PM ET with Dr. @staceylclardy.bsky.social for practical, patient-friendly guidance on communicating symptoms and advocating for your care. Live Q&A included. us02web.zoom.us/webinar/regi...
Every rare disease breakthrough starts with patients. We’re proud to share part 2 of “Demystifying Clinical Trials,” helping patients better understand research, rights, trial phases & participation. Read the patient-friendly guide: www.sumairafoundation.org/demystifying...
🇬🇭 We're coming to Ghana! We're partnering with The Nerve of My MS for the 1st AFRICTRIMS Patient Day on May 29th in Accra. If you're a patient, caregiver or clinician impacted by or working in #MS, #NMOSD or #MOGAD, join us! To register, visit www.tinyurl.com/TSFGhana
MAJOR news for the #MG community 🚨 The FDA has expanded approval for VYVGART + VYVGART Hytrulo to all adults with generalized #myastheniagravis, including MuSK+, LRP4+ and seronegative patients. More access. More recognition. More hope argenx.com/news/2026/pr...
argenx | argenx Announces U.S. FDA Approval Expanding VYVGART and VYVGART Hytrulo for Use in All Adult Patients Living with gMG
The science of co-creation drives our quest to engineer life-changing immunology solutions, the resilient spirit of patients fuels our urgency to deliver them.
argenx.com
A study published in @springernature.com's Journal of Neurology compared vision-relation #qualityoflife in patients with #NMOSD and #MOGAD versus patients with #MS and healthy individuals. All patients had worse vision-related quality of life. Summary: www.sumairafoundation.org/summaries/vi...
Miranda was training for an Ironman - until #NMOSD changed everything. Diagnosed in just 3 weeks, she turned fear into purpose - now using her voice to raise awareness and educate others. Read & share her story. No one should face NMOSD alone. www.sumairafoundation.org/mirandas-nmo...
You don’t have to navigate chronic pain alone. 💙 Join us Monday, May 18 at 3:30 PM EST for a patient-focused webinar with Dr. Anastasia Vishnevetsky, sharing practical strategies to better understand and manage chronic pain + a live Q&A. us02web.zoom.us/webinar/regi...
