The Sumaira Foundation

10/16/2026

When a child is living with a rare neuroimmune disorder, the journey can look very different - for the child, their parents and their entire family. 💗

In a recent From the Experts webinar, Dr. Kristen Fisher shared practical insights on pediatric neuroimmune disorders, including what families should know, questions to ask and how to navigate care.

Watch the replay now on our YouTube channel. https://youtu.be/RIYdWOrJYZQ?si=Wl5dBcBYMghnMfCY

10/15/2026

🇦🇷 Después de atravesar recaídas severas de NMOSD, años de rehabilitación y desafíos que muchas veces son invisibles para los demás, Mónica eligió seguir adelante y redescubrir la alegría a través de las danzas folclóricas.

Hoy, comparte su historia para recordarnos que un diagnóstico puede cambiar nuestra vida, pero no define quiénes somos. Con el apoyo de su familia, su fe y su pasión por el baile, Mónica nos demuestra que siempre hay motivos para seguir adelante.

Su mensaje para nuestra comunidad: “Ante la opción de echarme a morir o elegir la vida, elegí estar aquí”.

A través de su rol como embajadora de TSF, Mónica busca acompañar a otras personas que viven con NMOSD y ayudarnos a iluminar la oscuridad de esta enfermedad. 💗

✨ No estamos solos en este camino. Leé la historia completa de Mónica y conocé su inspirador recorrido.
www.sumairafoundation.org/la-historia-de-monica-con-nmosd-de-la-paralisis-a-la-danza-iluminando-el-camino-desde-argentina

10/14/2026

10/14/2026

What happens after a MOGAD attack? How can future relapses be prevented? And what about the symptoms that continue to affect daily life?

A new review published in Frontiers in Neurology explores these important questions, bringing together current knowledge on the treatment and management of myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD).

🧠 What does the paper cover?
- Treating acute attacks
- Preventing future relapses
- The importance of steroid tapering
- Life beyond attacks
- Emerging treatment strategies

Why does this matter? MOGAD can affect people differently, and treatment decisions must be individualized. This review highlights the importance of addressing both disease activity and the symptoms that shape patients’ everyday lives, while recognizing that many treatment questions remain under investigation.

TSF is proud to support the advancement and accessibility of scientific knowledge. The publication fees for this paper were funded by The Sumaira Foundation, helping make this research available to the wider community.

📖 Read the full open-access paper: https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2026.1965135/full

10/14/2026

“TSF has built something truly unique by bringing the patient perspective directly into research, advocacy, education and community,” said Maureen. “I am honored to be part of this team.”

We’re thrilled to welcome Maureen A. Mealy, PhD, RN, as The Sumaira Foundation’s Vice President – Research Initiatives! 💗

With more than two decades of experience spanning patient care, clinical research, academic medicine and medical affairs, Maureen brings deep expertise in rare neuroimmunologic diseases and a longstanding commitment to asking the research questions that matter most to patients.

In her new role, Maureen will help lead TSF’s growing research portfolio, including the Foundation’s PCORI-funded $9 million NMOSD comparative effectiveness trial, while strengthening patient-centered research and collaboration among patients, clinicians, researchers and other stakeholders.

We’re excited for this next chapter of research at TSF. Please join us in welcoming Maureen to the TSF team!
www.sumairafoundation.org/the-sumaira-foundation-announces-maureen-mealy-joining-as-vice-president-research-initiatives

10/13/2026

On September 13, our community showed up in the rain for TSF’s 2026 Annual 5K for Rare Neuroimmune Disorders and what a powerful day it was!

🦄 135 registrations and 91 participants who ran, walked, rolled, cheered and stood together.

🦄 $10,000 raised with 100% of proceeds supporting research for rare neuroimmune disorders.

A special thank-you to TSF Ambassador Terry Clark, who organized the event for the second year in a row alongside her son Patrick, as well as Fred and Kristen for organizing fundraisers to support the 5K. And thank you to our generous sponsors, volunteers and everyone who made this day possible!

Every mile represents hope. Every dollar helps advance research. And every person who shows up reminds us that we are stronger together. 💛

Relive the day, view photos and see the highlights: www.sumairafoundation.org/event-recap-2026-annual-5k/

See you at the 2027 TSF 5K! 🏃🏻‍♀️🎽🚶🏼‍♂️

EVENT RECAP | 2026 ANNUAL 5K. Sumaira Foundation works hard to bring global awareness to Neuromyelitis Optica Spectrum Disorder.

10/13/2026

Living with a rare neurological condition affects more than physical health; it can impact emotional well-being, mobility, independence and everyday life.

That’s why connection, community and a whole-person approach to care matter.

The Sumaira Foundation is excited to spotlight Rare in Motion, a hybrid movement and wellness event presented by Know Rare and Health Haven.

Join patients, caregivers, advocates and experts for adaptive exercise demonstrations, conversations about emotional well-being, and insights into research and care across rare neuromuscular conditions.

📅 Sunday, October 18, 2026
🕔 5-8PM EST
📍 Attend in person in New York City or join the livestream from anywhere!
🔗 https://meet.knowrare.com/rare-motion

Whether you’re living with a rare condition, supporting a loved one or working to improve rare disease care, there’s a place for you in this community.

10/12/2026

El manejo del trastorno del espectro de la neuromielitis óptica (NMOSD) se ha centrado tradicionalmente en controlar los brotes agudos y reducir la actividad del sistema inmunitario. Sin embargo, vivir con NMOSD implica mucho más que tratar la enfermedad: los pacientes conviven a diario con sus efectos físicos, cognitivos y emocionales.

Este encuentro propone un abordaje más integral, reuniendo a 15 expertos de distintas disciplinas, entre ellas neurología, investigación clínica, sexología, kinesiología, salud mental y fonoaudiología, entre otras.

El objetivo es transmitir un mensaje fundamental: el bienestar del paciente no depende únicamente de controlar la inflamación del sistema nervioso, sino también de brindar apoyo para afrontar los desafíos de la vida cotidiana y mejorar su calidad de vida.

📅 Fecha: 24 de octubre, cumpleaños de Eugène Devic
🕑 Horario: 14:00 h (hora de Argentina, ART)
https://us02web.zoom.us/webinar/register/WN_qJPifmNLRjqY9IgQcmQCPQ #/registration

Este programa exclusivo está a cargo de la Dra. Maria Eugenia Balbuena Aguirre, neuróloga argentina, quien también estará a cargo de la moderación.

10/12/2026

¡Conozcan a Mónica, la primera Embajadora de Pacientes de TSF en Argentina! 🇦🇷

Mónica fue diagnosticada en diciembre de 2018 tras dar positivo en las pruebas de anticuerpos contra la acuaporina-4 (AQP4). Sus primeros síntomas incluyeron vómitos persistentes, hipo, dolor muscular y dificultad para caminar.

Hoy convive con dolor crónico y diversas discapacidades, pero se mantiene activa y sigue en movimiento a través del pilates y la danza folclórica.

Desde Argentina, su misión como Embajadora de TSF es brindar orientación y apoyo a la comunidad de pacientes, transformando su propia experiencia en una luz que guíe e ilumine el camino de quienes viven con esta condición.

Mónica se une al equipo de TSF en Argentina, junto al Dr. Edgar Carnero Contenti, el Dr. Ricardo Alonso, la Dra. Eugenia Balbuena y la Dra. Verónica Tkachuk.

¡Acompáñennos a darle la bienvenida a Mónica!