The Sumaira Foundation

09/02/2026

Register for the upcoming PREVAIL event, a live virtual program featuring an NMOSD specialist and an NMOSD patient on September 9.

NMOSD specialist Jeffrey Hernandez, DNP, APRN, MSCN will share insights into disease management and a treatment option, and NMOSD patient Jasmine will share how they have navigated the complexity of living with NMOSD. Event sponsored by Amgen.

Register here: https://bit.ly/3UsTjvj

09/02/2026

“Mi cuerpo puede tener un diagnóstico, pero yo sigo siendo dueña de mi destino y de mi paz.”

🇨🇴 Para Adriana, el camino hacia un diagnóstico de NMO estuvo marcado por la incertidumbre, la resiliencia y una determinación inquebrantable por entender qué estaba sucediendo con su cuerpo.

Después de perder repentinamente la visión en 2017, siguieron años de síntomas y preguntas sin respuesta. En mayo de 2025, finalmente recibió un diagnóstico de neuromielitis óptica seronegativa (NMOSD) y, con él, llegó algo inesperado: paz.

Hoy, Adriana continúa con su tratamiento con gratitud y encuentra fortaleza en su familia, su fe y el yoga. Su historia nos recuerda que, aunque un diagnóstico puede convertirse en parte de nuestras vidas, no define quiénes somos.

Gracias, Adriana, por compartir tu voz con la comunidad de TSF.
https://www.sumairafoundation.org/la-historia-de-adriana-con-nmosd-resiliencia-frente-a-la-incertidumbre/

09/01/2026

When you’re focused on caring for someone else, it can be easy to put your own needs on the back burner.

Join Dr. Daniel Rohe from Mayo Clinic for a compassionate conversation about caregiver burnout, including:
💟 what is caregiver burnout
💟 the warning signs to look out for
💟 Ways to prevent and manage burnout early

We’ll discuss:
✔ practical strategies for managing uncertainty
✔ staying connected to your community
✔ preparing for periods of increased intensity
✔ finding additional support

Dr. Rohe will also share helpful resources, including books and podcasts, for caregivers who may need a little extra support along the way.

Whether you’re a spouse, parent, family member, friend or another loved one supporting someone with a rare neuroimmune condition, you don’t have to navigate the caregiver journey alone.

Join us live on Tuesday, September 15 at 5 PM PT / 8 PM ET.
https://us02web.zoom.us/webinar/register/WN_709I5DmpRiW8M95mcdaRgw

Those who attend live will have the opportunity to ask Dr. Rohe questions during a live Q&A.

Caregivers are an essential part of the rare neuroimmune community—but caring for someone you love can come with uncertainty, stress, and challenges that are not always easy to talk about. When you’re focused on supporting someone else, it can be easy to put your own needs on the back burner. Jo...

09/01/2026

🇩🇪🇦🇹 This month's research summary features a study based in Germany and Austria that assessed how immunosuppressive treatments are chosen for NMOSD and MOGAD patients in normal medical practice, how and when treatment approaches are changed and how effective these treatments are.

This study included 493 patients from across 19 German hospitals and 1 Austrian hospital between 1975 and 2022:
🦄 320 AQP4+ NMOSD patients
🦄 44 seronegative NMOSD patients
🦄 129 MOGAD patients

Rituximab and azathioprine were the most widely used treatments for both NMOSD and MOGAD.

Since 2019, newly approved treatments for NMOSD (eculizumab, inebilizumab, ravulizumab and satralizumab) have gradually increased in usage for AQP4-positive NMOSD.

Read the insightful full summary here: https://www.sumairafoundation.org/summaries/real-world-multicentre-cohort-study-on-choices-and-effectiveness-of-immunotherapies-in-nmosd-and-mogad/

08/31/2026

Join TSF for a special edition of our Meet the Author series featuring Lisa Lauter, an author and patient living with autoimmune encephalitis (AE), and author of the memoir "Songbirds Keep Singing"

In this heartfelt conversation, Lisa will share the story behind her book and what inspired her to put her experience with AE into words. "Songbirds Keep Singing" offers a powerful look at the realities of living through a rare neuroimmune condition and serves as a reminder that even in the most difficult chapters, there can be hope, resilience, connection and a story worth telling.

Lisa will talk about the journey of writing and publishing her memoir, what she hopes other patients and families take away from her story, and how sharing our experiences can help others feel seen, understood and less alone.

Whether you're living with a rare neuroimmune condition, supporting a loved one, or simply want to hear an inspiring patient story, we hope you'll join us for this meaningful conversation.

Monday, September 14 at 5:00 PM PT / 8:00 PM ET

Those who attend live will have the opportunity to ask Lisa questions during the conversation https://us02web.zoom.us/webinar/register/WN_ilY-drduQ5us6r2OlNvblg

08/31/2026

"I believe every patient deserves to be heard, understood, and given the opportunity to receive timely care and support. Through The Sumaira Foundation, I hope to help raise awareness about NMOSD and MOGAD, empower patients and families, and contribute to building a more informed and compassionate healthcare community.", says Vanessa.

🇬🇭 Meet Vanessa Ohenewa Ofori, TSF's Newest Ambassador for Ghana!

Vanessa Ohenewa Ofori is a medical student at the University of Cape Coast in Ghana, with a deep passion for neurology, patient advocacy, and creating greater awareness of rare neurological conditions.

As a TSF Ambassador, Vanessa is honored to represent Ghana and is committed to advancing education, advocacy, and hope for individuals living with rare neurological diseases across Ghana and beyond.

Welcome Vanessa!

08/28/2026

Music can create connection, comfort and meaningful moments in caregiving.

We cannot always take away the illness, pain or uncertainty, and music cannot always make someone feel better. But music can meet them where they are.

💙 Creating a playlist together, listening to a favourite song, singing, or sharing memories through music can help caregivers reconnect with the person they are caring for, rather than focusing only on the illness.

🌿 Music can help someone feel what they are already feeling, remind them they are not alone, and create a moment of comfort and connection. Sometimes, that moment is enough.

Join us each month for meaningful conversations, practical guidance, and shared wisdom from caregivers who truly understand. You are not alone.
https://youtu.be/xVEnKVW8nVY (or visit TSF's YouTube page)

08/28/2026

Double-Negative Neuromyelitis Optica Spectrum Disorder: A Systematic Review and Meta-Analysis https://hubs.la/Q04vqVfg0

08/27/2026

Meet Ari, Citizen Health's AI-powered rare disease companion designed to help you and your loved ones navigate your rare disease journey with information, resources, tools and support... all in one place!

Ari can help you:
✅ better understand your condition(s)
✅ organize your health information
✅ communicate with your care team
✅ obtain answers in real time
✅ navigate resources
and so much more

⏰ Early access spots are available for a limited time! Sign up to meet Ari: https://ari.citizenhealth.com/?utm_source=sumaira-foundation

08/27/2026

Aquí tienes una versión pensada para un video de YouTube que seguirá siendo relevante con el tiempo, eliminando las fechas y el énfasis en el evento en vivo:

Nutrir el cuerpo es fundamental cuando se vive con una enfermedad desmielinizante.

Acompáñenos al Dr. Carlos Navas, de Colombia, quien lidera la iniciativa de Inmunonutrición LATAM de LACTRIMS, para conocer las recomendaciones actuales y consejos prácticos sobre nutrición para las personas que viven con enfermedades desmielinizantes.

En esta conversación, el Dr. Navas comparte información basada en la evidencia sobre el papel de la nutrición en el contexto de las enfermedades neuroinmunológicas y responde a preguntas frecuentes sobre alimentación, salud y bienestar. https://youtu.be/N7J2mfnUiuc

Esperamos que este recurso le ayude a comprender mejor cómo una alimentación adecuada puede contribuir al bienestar general de las personas que viven con enfermedades desmielinizantes.

Aquí tienes una versión pensada para un video de YouTube que seguir...