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The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · 1d

Join us on October 18th for TSF's Seattle Patient Day for Rare Neuroinflammatory Disorders for a day of education, connection and impact! www.tinyurl.com/TSFSeattle

Meet the AE, CNS Vasculitis, MOGAD, neurosarcoidosis, NMOSD and SPS patient & caregiver panelists🦄

@shuvroroy.bsky.social

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The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · 2d

We’re not surprised - you’re brilliant!

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The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · 2d

You’re Bluesky-famous!

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Reposted by The Sumaira Foundation (TSF)

Lois King (MPH) 🇬🇧 🇬🇭 @loisemilyking.com · 2d

Welcome to all my new followers (can't quite believe I have this many but thank you, starter packs 🙏🏾)!

I'm a ✨️recovering academic✨️ a.k.a. global health consultant, podcast host and rare disease patient advocate with @thesumairafdn.bsky.social based in the UK 👋🏾

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The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · 2d

🇵🇱 Czy Ty lub ktoś Ci bliski zmaga się z #MOGAD?
Dołącz do nas 14 października o 18:00 CET na webinar z udziałem ekspertów – dr. Bonka, dr. Juryńczyka i dr. Wrony – by poznać objawy, leczenie i badania kliniczne MOGAD. us02web.zoom.us/webinar/regi...

The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · 3d

🇨🇴 La vida de Olga cambió el 13/04/23 al ser diagnosticada con neuromielitis óptica. Tras años de dolor, su cuerpo se debilitó, pero no su espíritu. Hoy vive con fe y esperanza. Su historia refleja resiliencia, amor y la fuerza de renacer tras la caída. #NMOSD

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The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · 3d

🇯🇵 Meet Dr. Higuchi Taro, a pediatrician and #MOGAD patient diagnosed in 2018.

In 2024, he founded the MOG Network Patient Association to raise awareness of MOG antibody disease, provide patient education & improve/accelerate diagnostics.

We are proud to partner with MOGnet

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The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · 3d

🇦🇷 Bienvenida la Dra. Verónica Tkachuk, neuróloga, MSc en Neuroinmunología y docente en la UBA, como Embajadora Clínica de TSF en Argentina. Con foco en #NMOSD, #MOGAD y #EM, busca fortalecer la educación y conexión de pacientes en LATAM.

The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · 4d

A @plosone.org study assessed the emotional and psychological impact of #NMOSD on patients and caregivers. This study highlights the need for mental health support.

www.sumairafoundation.org/summaries/the-psychological-burden-of-nmosd-a-mixed-method-study-of-patients-and-caregivers

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The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · 7d

📰After her daughter’s #NMOSD diagnosis, Dr. Maggie Kang (TSF Ambassador of VA) embraces grief and growth. Letting go of “normal,” the family found resilience, purpose and hope in a redefined life and community support.

Read their article in @huffpost.com:
www.huffpost.com/entry/daught...

My Daughter Was Diagnosed With An Incurable Illness. How Could People Look Me In The Eye And Say These 2 Words?

"Friends meant well. They thought they were encouraging me. But to me, it was a dismissal."

www.huffpost.com

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The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · 9d

👩🏾‍🏫CLASS WILL SOON BE IN SESSION!

Join our free 2-week virtual program designed to improve brain health and help make sustainable changes in your life through wellness, nutrition, physical & psychological health education.

Learn more & register: www.brainhealthcr.org/general-3

The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · 10d

🇨🇦 We're coming to Toronto!

Are you an #AE, #MG, #MOGAD or #NMOSD patient, partner, care-partner, clinician, nurse, researcher and/or advocate in Canada? You're invited to our event on Saturday, November 8th www.tinyurl.com/TSFToronto

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The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · 10d

Ilona led an active life until unexplained symptoms led to a diagnosis of TM, then #MS, and eventually #NMOSD in 2018 after years of decline. She also battled breast cancer… TWICE!

Read about Ilona's “new normal” www.sumairafoundation.org/ilonas-nmosd...

The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · 15d

🇵🇱 Czy Ciebie lub kogoś bliskiego dotknęła plaga MOGAD? Dołącz do nas 14 października o godz. 18:00 CET na ekspercką recenzję #MOGAD z udziałem dr. Robert Bonek i dr. Pawel Wrona.

us02web.zoom.us/webinar/regi...

The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · 21d

🇮🇹 Siete tutti invitati al webinar - Salute femminile e NMOSD/MOGAD: dialogo su gravidanza, allattamento e sessualità - esclusivo di TSF Italia dedicato alle donne che vivono con #NMOSD o #MOGAD!

📆 15 ottobre
👩‍⚕️ Dott.ssa Sara Carta
🔗https://us02web.zoom.us/webinar/register/WN_I2EUzRCMR9Gdtm92DG6WOA

The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · 21d

Have you or someone close to you been affected by #MOGAD?

We were joined by Dr. Saif Huda, Dr. Silvia Messina and Dr. Katharina Fink who discussed MOG antibody disease and the importance of patient participation in clinical trials. www.youtube.com/watch?v=4aB1...

Understanding MOGAD & The Importance of Patient Participation in Clinical Trials

YouTube video by The Sumaira Foundation

www.youtube.com

The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · 23d

🩷🧡💛 It’s been one month since our SLC Patient Day + we're still smiling!

Read the summary, view the photo gallery and relive our most impactful day yet here: www.sumairafoundation.org/event-recap-...

Thank you @staceylclardy.bsky.social, @uofuneuronews.bsky.social for your collaboration 🌺

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The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · 23d

You're invited! The University of Miami is hosting a free education program led by clinician experts on Saturday, October 25th for people living with #MS, #NMOSD, and #MOGAD, and their loved ones.

To register, visit
Https://cvent.me/WA2Dvy?rt=yA5lXw7YgEuZ6FVQM-NlYQ

The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · 24d

Descubre por que el Yoga es para todos y puede ayudarte. El yoga no es esa idea que se tiene de una disciplina física. El Yoga es mas que físico, es celular, mental, intelectual y espiritual: te afecta en todo tu ser.

us02web.zoom.us/webinar/regi...

The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · 24d

Del 15 de septiembre al 15 de octubre de 2025 es el Mes de la Herencia Hispana.

Explore nuestro sitio web en español para conectarse con un embajador de TSF, ver seminarios web de educación para pacientes, aprender sobre #NMOSD y #MOGAD y leer historias inspiradoras

The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · 25d

🇫🇷 Vous ou l’un de vos proches est concerné par la #MOGAD ?

Nous avons été rejoints par le professeur Jérôme de Seze et le Dr Sophie Elands, qui ont présenté MOGAD, la prise en charge de la maladie et les essais cliniques. www.youtube.com/watch?v=Xw0P...

Comprendre MOGAD et l'importance de la participation des patients aux essais cliniques

YouTube video by The Sumaira Foundation

www.youtube.com

The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · 28d

Meet the experts at TSF's Seattle Patient Day for Rare Neuroinflammatory Disorders (AE, CNS vasculitis, MOGAD, neurosarcoidosis, NMOSD and SPS) on October 18th! www.tinyurl.com/TSFSeattle

We invite patients, caregivers, clinicians and advocates to join us! @shuvroroy.bsky.social

The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · 29d

🇪🇸 When Rafaela, his unbreakable sister, began losing her vision over Christmas 2024, Roberto rushed her to the hospital, unprepared for the diagnosis that followed.

What started as eye strain turned into a terrifying descent into #NMOSD

www.sumairafoundation.org/robertos-nmo...

The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · Sep 10

Você ou alguém próximo a você foi afetado pelo #MOGAD?

Este programa conta com a presença do Dr. Douglas Sato 🇧🇷 e da Dra. Ernestina Santos 🇵🇹, que forneceram uma visão geral do MOGAD e da importância da participação do paciente em ensaios clínicos.

youtu.be/Wg18jsKeQIo

Compreendendo a MOGAD e a importância da participação do paciente em ensaios clínicos

YouTube video by The Sumaira Foundation

youtu.be

The Sumaira Foundation (TSF) @thesumairafdn.bsky.social · Sep 10

🏆 Honoring visionary leaders in rare disease, TSF’s 2025 Global Rare Trailblazer Award goes to Dr. Vanda A. Lennon of @mayoclinic.org

Join us on September 24 for the award ceremony, research updates & networking: www.eventbrite.com/e/1364334644...