@thesumairafdn
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
✨TSF Ambassador Spotlight: Where Rarity Shines!
Meet Sheila, TSF’s Cali Ambassador, #NMOSD advocate, entrepreneur, artist & author. Inspired by her journey and Ugandan roots, her children’s book Lion’s Water follows Akiiki, who finds courage within. 🦁
sheilangonzihackbarth.com/bookstore
🇫🇷 Découvrez « NMO Bonjour », notre court-métrage avec Bérengère. Mère vivant avec la #NMOSD depuis plus de 20 ans, elle partage avec sa fille Emma une histoire de résilience et d’amour.
🎥 Finaliste du Festival du film de WHO 2023
youtu.be/S61aOuBWf4s?...
March is #NMO Awareness Month! 🩷🧡💛
Did you know ~95% of rare diseases lack approved therapies?
Fortunately, #NMOSD is among the ~5% that have treatment options, with 4 approved therapies today.
Learn more: www.sumairafoundation.org/awareness/th...
On March 8 we celebrate International Women’s Day!
Did you know
🦄 Autoimmune diseases affect women 2:1
🦄 Rare diseases are 10x more likely in women
🦄 #MOGAD shows no female predominance
🦄 Women are 9x more likely to have #NMOSD
Grateful for the women in our community. 🩷🧡💛
On this #RareDiseaseDay I've reflected on how far I've come since my NMOSD diagnosis nearly 3 years ago - shoutout to my support network of family and friends, and finding new purpose by working with the @thesumairafdn.bsky.social 🩷
March is #NMO Awareness Month!
#NMOSD (also called Devic’s disease) is a rare neuroimmune condition where the immune system attacks the central nervous system, often targeting AQP4.
Learn about NMOSD, research, explore resources and read patient stories: www.sumairafoundation.org
🇩🇪 Begleiten Sie uns am 7. März in Berlin, um von Expert:innen mehr über #MG, #MOGAD und #NMOSD zu erfahren. Die Teilnahme an der Veranstaltung ist kostenlos, und es wird ein Mittagessen serviert!
Zur Anmeldung besuchen Sie tinyurl.com/TSFBerlin (Anmeldung erforderlich).
🧠🇨🇦 After battling autoimmune encephalitis / #AE, Alanna transformed her journey into advocacy. From patient to research partner - her story inspires change.
Read more: www.sumairafoundation.org/alannas-ae-s...
February is Black History Month 💛❤️💚🖤
We honor Rev. Jesse Jackson, civil rights leader and recipient of the Presidential Medal of Freedom (2000). His journey with progressive supranuclear palsy (PSP) also shed light on this rare neurodegenerative disease.
1941–2026
🇵🇷 El 24 de enero de 2026, TSF celebró en Puerto Rico su Día del Paciente junto al Centro de EM de PR, reuniendo a +80 pacientes, cuidadores y profesionales impactados por #EA, #MOGAD, #NMOSD, neurosarcoidosis y #SPS.
www.sumairafoundation.org/resumen-del-...
Current evidence and knowledge gaps in family planning and pregnancy in #myastheniagravis, #NMOSD, and #MOGAD
www.thelancet.com/journals/lan...
When rare disease besties link up: Honolulu edition 🏝️🤙🏾🩷
Happy #RareDisease Week! 🦓
🧠❤️February 22nd is World Encephalitis Day, a day observed every year to raise global awareness about encephalitis, a serious condition involving inflammation of the brain.
#RED4WED
On #NationalCaregiversDay (Feb 20), we honor the strength, compassion & resilience of caregivers in our rare neuroimmune community 💜
To every parent, partner, sibling & friend who shows up through it all - we see you, we thank you, we celebrate you.
In honor of World Encephalitis Day (Feb 22), TSF shares an exclusive 2022 interview with Susannah Cahalan. She discusses her journey with anti‑NMDA receptor encephalitis, her NYT bestseller Brain on Fire, advocacy, and Hollywood’s take on her story. 🎥
youtu.be/kWTyY1gxZho?...
🏆 The 2025 #NobelPrize in Medicine was awarded to Mary E. Brunkow, Fred Ramsdell & Shimon Sakaguchi for discovering how the immune system avoids attacking the body itself.
Official summary:
nobelprize.org/prizes/medicine/2025/summary/
🤍 Caregivers are the bridge of hope for those living with #rarediseases and they deserve support too.
“Caregiver Conversations,” led by TSF Ambassadors, offers global support, education & connection for rare neuroimmune caregivers.
🔗 sumairafoundation.org/caregiver-conversations/
February is #BlackHistoryMonth 💛❤️💚🖤
#NMOSD disproportionately affects Black Americans: ~13/100k prevalence vs ~5/100k in White Americans, ~28% of U.S.
NMOSD patients are Black, with higher incidence and worse pain & cognitive outcomes. Share your experiences.
💡#NMOSD phenotype but AQP4–/MOG–? 💡
New international study in N2 shows anti-CD20 therapy cut attack risk by 98% vs no treatment, with >85% relapse-free, supporting anti-CD20 as first-line.
www.neurology.org/doi/10.1212/...
T-18 days until our Honolulu Patient Day for #MG, #MOGAD and #NMOSD! Meet our panelists🦄🧠
Join us on 2/21 for a day of education and community.
This is a free in-person event and lunch will be provided. www.tinyurl.com/TSFHawaii
🌺 A hui hou
🇯🇵 TSF is excited to host the Gala Dinner for European Charcot Foundation's 2nd Update on #NMOSD & #MOGAD meeting in Tokyo!
Join us for an evening of networking with experts, clinicians, researchers & key stakeholders.
To register for the workshop, visit amarys-jtb.jp/ecfupdate2026
🇨🇦 GREAT NEWS! As of February 1, 2026, Ultomiris is now listed for the treatment of patients with #NMOSD in Alberta.
In honor of #RareDisease Day 2026, join us for a special "Meet the Author" fireside chat with Jayne Mattingly, author of “This is Body Grief” on February 26th at 7 PM EST.
A thoughtful, honest conversation you won’t want to miss. us02web.zoom.us/webinar/regi...
We’re excited to partner with MG Holistic Society for our Honolulu Patient Day on February 21st!
Are you or your loved one impacted by #myastheniagravis (#MG), #MOGAD or #NMOSD? Join us for a day of education and community 🌺 www.tinyurl.com/TSFHawaii
🇰🇷🦄 In a study that reviewed records of 100 children with #MOGAD in @SeoulNatlUni Children's Hospital,
- 43 had at least 1 relapse
- Average age at first episode -> 7 years
- Optic neuritis/brain inflammation most common initial presentation
Learn more: sumairafoundation.org/summaries/ph...
Earlier Plasma Exchange Could Yield Better Outcomes in #MOGAD
www.aao.org/education/ed...
🇵🇦 Anayansi, de Panamá, comparte su historia viviendo con enfermedades crónicas y raras desde joven. Más que diagnósticos, es un relato de resiliencia, adaptación y dignidad, enfocado hoy en la estabilidad, la autonomía y la calidad de vida.
www.sumairafoundation.org/la-historia-...
Are you or your loved one impacted by #AE, #CNSvasculitis, #MG, #MOGAD, #neurosarcoidosis, #NMOSD or #SPS?
TSF is inviting patients & caregivers impacted by rare neuroinflammatory disorders from all over Hawaii to join us in Honolulu on Saturday, February 21st!
www.eventbrite.com/e/tsfs-honol...
🇵🇷 Conoce a los expertos en nuestro Día del Paciente para Trastornos Neuroinflamatorios Raros - Puerto Rico el sábado, 24 de enero.
El evento es gratuito e incluye almuerzo. Se requiere registro: www.tinyurl.com/TSFPuertoRico
🇨🇦 GREAT NEWS! As of January 1, 2026, Ultomiris is now listed for the treatment of patients with #NMOSD in Saskatchewan.
Click to read the public bulletin for more information:
www.sumairafoundation.org/wp-content/u...
