The Sumaira Foundation

TSF's Human Collective Project Meetings
2026-09-10 20:00 - 21:00, 2026-10-08 20:00 - 21:00, 2026-11-12 20:00 - 21:00, 2026-12-10 20:00 - 21:00 (America/New_York) | Virtual: United States, United States
The Human Collective Project (HCP) is TSF’s support group meeting offered to anyone who has been affected/impacted by NMOSD/MOGAD. The program came into existence during the height of the COVID-19 pandemic in 2020, when most NMOSD/MOGAD felt particularly isolated and vulnerable to the coronavirus as immunosuppressed/immunocompromised members of society. The isolation many of us experienced unveiled a great need and opportunity for us to connect in a meaningful way to offer our support to one another. Since 2020, we have expanded the program to offer more sessions in multiple geographies to ensure that everyone in the NMOSD/MOGAD communities feels welcomed and included. As we always say, HCP is a great way to meet others in similar circumstances in this rare community; it is a safe space to laugh, cry, vent, share wins, etc. This program is driven and led by TSF Patient and Caregiver Ambassadors worldwide.

TSF 5K For Rare Neuroimmune Disorders
2026-09-13 09:00 - 12:00 (America/New_York) | Weston Town Hall, 11 Town House Rd, Weston, 02493, United States
Turning Miles into Medical Progress – Join us on September 13th for TSF’s 2nd 5K to raise money for research!
Last year’s inaugural 5K helped fund a groundbreaking AI-powered diagnostic initiative with the potential to transform how rare neuroimmune diseases are identified around the world.
Using only a smartphone image, this technology is being developed to rapidly and accurately analyze diagnostic testing, helping clinicians detect rare neuroimmune conditions earlier – especially in underserved regions where access to specialized care and testing is limited. Earlier diagnosis can lead to faster treatment, better outcomes and a greater chance of preventing permanent disability, vision loss and disease progression.
What started as a community race is now helping drive a global solution that could expand access to life-changing care for patients everywhere. By participating in this year’s 5K, you are not just supporting awareness; you are directly fueling innovation, earlier diagnosis and hope for the rare disease community worldwide.
This is a family-friendly event – all are welcome (including doggos!) https://runsignup.com/Race/MA/Weston/TSF5KForRareNeuroimmuneDisorders

This event is being organized by Terry Clark, NMOSD patient and TSF Ambassador of MA: “As many of you may know, four years ago, May 2022, I was diagnosed with a rare autoimmune disease called NMO. This 5k has been something I’ve wanted to do for awhile so I’m excited to continue organizing this annual race.”

TSF HCP Caregivers - Rewards of Caregiving
2026-09-13 12:00 - 13:00 (America/New_York) | Virtual: Global
The Caregivers Human Collective Project (HCP) is a groundbreaking support group hosted by The Sumaira Foundation, created specifically for caregivers of individuals living with rare neuroimmune diseases like NMOSD and MOGAD. This first-of-its-kind session offers a safe, inclusive space for family members, partners, siblings, children, and loved ones to connect, share, and be heard. Led by our dedicated Caregiver Ambassadors, who bring their own lived experience and empathy to the conversation, participants can expect heartfelt conversations, mutual support, and practical insights into the caregiving journey. Whether you’re navigating the emotional, physical, or logistical challenges of caregiving, this group is designed to uplift and empower you through community, compassion, and connection.

Michigan Patient Day for Rare Neuroinflammatory & Related Disorders
2026-09-19 10:00 - 17:00 (America/New_York) | University of Michigan-Dearborn, 4901 Evergreen Rd, Dearborn, MI, 48128, United States
We’re coming to Michigan!
Are you or your loved one impacted by: CIDP*, MG*, MOGAD*, or NMOSD*? You’re invited to our event on Saturday, September 19th.
Join us for a day of education, community and fun to:
+ Meet local patients, partners, care-partners and clinicians+ Ask experts questions in real time about symptom management, treatments and therapies, comorbidities and more+ Learn about updates on the latest research and findings from local key opinion leaders
This event is being organized in collaboration with Dr. Rosemarie Walch (Memorial Healthcare) and Dr. Lisa Stropp (University of Michigan) and in partnership with MG Holistic Society and Myasthenia Gravis Foundation of Michigan (MGMI).
Registration is free and lunch will be served.
We can’t wait to see you in Michigan!
https://www.eventbrite.com/e/michigan-patient-day-for-rare-neuroinflammatory-related-disorders-tickets-1993976685944?aff=oddtdtcreator
The Sumaira Foundation team
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CIDP stands for chronic inflammatory demyelinating polyneuropathy
MG stands for myasthenia gravis
MOGAD stands for myelin oligodendrocyte glycoprotein antibody-associated disorder
NMOSD stands for neuromyelitis optica spectrum disorder

Little Patients, Big Questions: Understanding Pediatric Neuroimmune Diseases
2026-09-21 20:00 - 21:00 (America/New_York)
When your child is living with a neuroimmune disease, the questions can feel endless. What is happening in their body? What does a diagnosis mean for their future? And how can parents and caregivers feel more confident navigating care?
Join Dr. Kristen Fisher of Texas Children’s for an approachable conversation about pediatric neuroimmune diseases. Together, we’ll explore what makes these conditions unique in children, what families should know about diagnosis and treatment, and how parents and caregivers can become informed and empowered partners in their child’s care.
Whether your child is newly diagnosed, navigating ongoing symptoms, or you’re simply looking for a better understanding of pediatric neuroimmune diseases, this webinar is designed with families in mind.
Monday, September 21 | 5:00 PM PT / 8:00 PM ET
https://us02web.zoom.us/webinar/register/WN_ICZaFGZ2TB2koEcKAkfaww
Live Q&A: Those who attend live will have the opportunity to ask Dr. Fisher their questions directly.
Made possible with support from Amgen.

Miami Patient Day for Rare Neuroimmune & Related Disorders
2026-09-26 10:00 - 17:00 (America/New_York) | 16701 Collins Avenue, Sunny Isles Beach, Florida 33160, 16701 Collins Avenue, Sunny Isles Beach, FL, 33160, United States
We’re coming to Miami!
Are you or your loved one impacted by: CIDP*, MG*, MOGAD*, or NMOSD*? You’re invited to our event on Saturday, September 26th.
Join us for a day of education, community and fun to:

Meet local patients, partners, care-partners and clinicians
Ask experts questions in real time about symptom management, treatments and therapies, comorbidities and more
Learn about updates on the latest research and findings from local key opinion leaders

This event is being organized in collaboration with The University of Miami and in partnership with MG Holistic Society.
Registration is free and lunch will be served.
https://www.eventbrite.com/e/miami-patient-day-for-rare-neuroinflammatory-related-disorders-tickets-1994071513576?aff=oddtdtcreator
We can’t wait to see you in Miami!
The Sumaira Foundation team
—
CIDP stands for chronic inflammatory demyelinating polyneuropathy
MG stands for myasthenia gravis
MOGAD stands for myelin oligodendrocyte glycoprotein antibody-associated disorder
NMOSD stands for neuromyelitis optica spectrum disorder

Día del Paciente sobre Trastornos Neuroinmunes y Relacionados Raros
2026-09-26 10:00 - 17:00 (America/New_York) | 16701 Collins Avenue, Sunny Isles Beach, Florida 33160, 16701 Collins Avenue, Sunny Isles Beach, FL, 33160, United States
¡Nos vemos en Miami!
¿Usted o un ser querido vive con CIDP*, MG*, MOGAD* o NMOSD*? Lo invitamos a acompañarnos en nuestro evento el sábado 26 de septiembre.
Acompáñenos a disfrutar de un día de educación, comunidad y convivencia para:
• Conocer a pacientes, aliados, cuidadores y profesionales de la salud de su comunidad.
• Hacer preguntas en tiempo real a expertos sobre el manejo de los síntomas, tratamientos, terapias, comorbilidades y mucho más.
• Conocer las últimas investigaciones y los hallazgos más recientes presentados por líderes de opinión de la región.
Este evento se organiza en colaboración con el University of Miami y en alianza con MG Holistic Society.
La inscripción es gratuita y se ofrecerá almuerzo.
https://www.eventbrite.com/e/dia-del-paciente-de-miami-sobre-trastornos-neuroinflamatorios-raros-tickets-1994072435333?aff=oddtdtcreator&keep_tld=true
¡Estamos deseando verlo en Miami!
El equipo de The Sumaira Foundation
—
CIDP significa polineuropatía desmielinizante inflamatoria crónica
MG significa miastenia gravis
MOGAD significa enfermedad asociada a anticuerpos contra la glicoproteína de oligodendrocitos de la mielina
NMOSD significa trastorno del espectro de la neuromielitis óptica

Financial Health Workshop Series - How to Set Goals, Build a Budget & Save
2026-09-28 18:00 - 19:00 (America/New_York)
Managing your finances can feel overwhelming, especially when living with the added costs and uncertainty that can come with a rare disease. In this first session of our three-part Financial Health series, Angelica Civilus, Vice President, Community Manager with Chase Bank, will share practical money skills to help you feel more confident about your financial goals.
Together, we’ll explore how to set realistic financial goals, create a budget that works for your life, and find ways to build savings—even when your resources may feel limited. Whether you’re just getting started or looking for ways to strengthen your current financial plan, this session will offer approachable tools you can put into practice right away.
Join us Monday, September 28th at 3pm PT / 6pm ET and take the first step toward feeling more confident about your financial future.
Register HERE.

Juniors in Neuroimmunology: Meet the Expert – II Edition
2026-10-01 - 2026-10-03 | Complesso di Sant’Andrea delle Dame – Aula Affreschi, Italy
Juniors in Neuroimmunology: Meet the Expert – 2nd Edition
Il corso, dedicato a giovani neurologi e assistenti in formazione, si propone di fornire una formazione aggiornata sulla diagnosi e sul trattamento delle principali patologie autoimmuni a carico del Sistema Nervoso Centrale e Periferico (incluse NMOSD/MOGAD, encefaliti autoimmuni, miastenia gravis, neuropatie autoimmuni, miositi, sindromi paraneoplastiche e neurotossicità associate agli inibitori dei checkpoint immunitari).
Il programma prevede lezioni tenute da esperti nazionali e internazionali ed una seconda parte, invece, caratterizzata da sessioni pratiche altamente interattive focalizzate su neuroimaging, diagnostica di laboratorio, neurofisiologia e discussione di casi clinici.
La partecipazione è riservata a medici italiani under 40, specialisti o assistenti in formazione in Neurologia o Immunologia Clinica.
Iscrizione e opportunità di supporto
La quota di iscrizione ordinaria è fissata in € 300,00 + IVA. È prevista la possibilità di richiedere l’iscrizione a titolo gratuito, subordinata alla valutazione del curriculum vitae da parte della segreteria scientifica. Il numero massimo di partecipanti ammessi è pari a 30.
Inoltre, per i partecipanti provenienti da regioni italiane diverse dalla Campania, sarà disponibile un rimborso per viaggio e alloggio fino a €300. Il supporto economico è limitato e sarà concesso ai partecipanti selezionati in base al Curriculum Vitae ad i 15 richiedenti con migliore/più attinente CV.
Il numero massimo di partecipanti ammessi è pari a 30.
Come candidarsi
Le candidature dovranno essere inviate entro il 10 giugno 2026 tramite il modulo di registrazione disponibile sul sito dell’organizzatore:
eventi8adv.it – Juniors in Neuroimmunology Meet the Expert II Edizione
I candidati selezionati saranno informati indicativamente a partire da circa 10 giorni dopo la scadenza delle candidature.

Financial Health Workshop Series - Improving Credit and Managing Debt
2026-10-05 18:00 - 19:00 (America/New_York)
Credit and debt can sometimes feel complicated, confusing, or even stressful—but understanding your options can be an important step toward greater financial confidence.
In the second session of our three-part Financial Health series, Angelica Civilus, Vice President, Community Manager with Chase Bank, will break down the basics of credit and share practical strategies for managing debt. We’ll talk about what can impact your credit, ways to work toward improving it, and helpful approaches to managing debt without feeling overwhelmed.
Whether you’re building credit for the first time, working to improve your credit, or simply want to better understand your financial options, this session is designed to meet you where you are.
Join us Monday, October 5th at 3pm PT / 6pm ET for an approachable conversation about building stronger financial habits and taking steps toward your goals.
Register HERE.

TSF HCP Caregivers - Family Caregivers
2026-10-11 12:00 - 13:00 (America/New_York) | Virtual: Global

Financial Health Workshop Series - Ways to Help Avoid Fraud & Scam
2026-10-12 18:00 - 19:00 (America/New_York)
Scams and financial fraud are constantly evolving, and knowing what to look for can help you protect yourself and your loved ones.
In the final session of our three-part Financial Health series, Angelica Civilus, Vice President, Community Manager with Chase Bank, will share practical tips for recognizing common scams, identifying potential warning signs, and taking steps to protect your personal and financial information.
We’ll talk about some of the ways scammers may try to reach you, what to do if something doesn’t feel right, and simple habits that can help you stay safer online and in everyday life. This session is designed to be approachable and empowering, so you can feel more prepared and confident when navigating today’s financial world.
Join us Monday, October 12th at 3pm PT / 6pm ET and learn ways to help protect yourself, your information, and your financial future.
Register HERE.

Comprendiendo el anticuerpo AQP4 en NMOSD
2026-10-15 18:00 - 19:00 (America/New_York) | Virtual: Global
¿Usted o un ser querido vive con NMOSD?
Lo invitamos a acompañarnos en un webinar especial titulado **”Comprendiendo el anticuerpo AQP4 en NMOSD”**, con la Dra. Pilar Perachino, de Argentina.
En esta sesión, la Dra. Perachino explicará qué es el anticuerpo AQP4, cuál es su papel en el NMOSD, cómo contribuye al diagnóstico de la enfermedad y por qué es tan importante para comprender su evolución y tratamiento.
Además, quienes se conecten en vivo tendrán la oportunidad de hacer sus preguntas a la Dra. Perachino en tiempo real.
¡Esperamos contar con su participación en esta conversación informativa e interactiva!

TSF x IPMSSG's Research Update & Networking Evening
2026-10-20 17:30 - 2026-10-21 22:00 (America/New_York)
Join TSF and IPMSSG on October 20, 2026, on the 22nd floor of the SickKids Patient Support Centre for an exclusive evening connecting global leaders in neuroimmunology. Enjoy an inspiring setting above Toronto’s skyline while engaging in meaningful conversations, collaboration and networking.
This special event will feature simultaneous research update sessions focused on adult and pediatric neuroimmunology, presented by internationally recognized experts. Following the presentations, attendees will enjoy time to socialize while enjoying a gorgeous view of Toronto.
Capacity is limited, and advance registration is required. Food and beverages will be served. https://www.eventbrite.com/e/tsf-x-ipmssgs-research-update-networking-evening-tickets-1994679754842
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A note about the program format: The adult and pediatric neuroimmunology research updates will run concurrently, allowing attendees to participate in the session most relevant to their area of interest. Throughout the evening, both communities will come together during refreshment breaks and the networking reception to foster collaboration, exchange ideas, and build connections across the global neuroimmunology community.
The Sumaira Foundation’s Research Update & Award Ceremony
Join internationally recognized experts for an engaging update on the latest advances in rare neuroimmunology, including diagnostics, clinical trials, patient registries, industry innovations and global neurology initiatives. We’ll also hear from ECTRIMS-MEDEN Fellows as they present updates on their research projects and emerging work in the field. The program will conclude with the presentation of TSF’s 2026 Global Rare Trailblazer Award, recognizing an individual whose exceptional contributions have advanced research, advocacy and care for the rare neuroimmune disease community.
IPMSSG’s Research Update
Join members of the IPMSSG for an interactive session highlighting the latest advances in pediatric neuroimmunology. The program will feature updates from ongoing research studies, presentation and discussion of survey results introduced at the IPMSSG 2025 Meeting, and collaborative conversations on future research priorities and goals. Attendees will also have the opportunity to learn about recruitment for new IPMSSG Steering Committee members and contribute to discussions on the future of a stand-alone IPMSSG meeting.

NMOSD & MOGAD: Global Challenges
2026-10-21 19:00 - 21:00 (America/New_York)
Are you a clinician, researcher, fellow, resident or trainee interested in NMOSD, MOGAD and related neuroimmunological disorders?

Join us for an evening of discussion, mentorship and networking with leading experts from around the world. Held alongside MSToronto 2026, this special event will bring together clinicians, researchers, trainees and patient advocacy leaders to explore the challenges and opportunities shaping the future of rare neuroimmunology.
The evening will begin with a moderated fireside discussion:
Overcoming Global Challenges in NMOSD and MOGAD Care and Research
The conversation will explore emerging therapeutic strategies, global disparities in diagnosis and treatment, collaborative research priorities and mentorship for the next generation of neuroimmunology professionals.
Featured Speakers

Dr. Jacqueline Palace (University of Oxford, UK)
Dr. Sara Mariotto (University of Verona, Italy)
Dr. Kazuo Fujihara (Fukushima Medical University, Japan)

Moderator

Dr. Dalia Rotstein (University of Toronto, Canada)

Following the discussion, guests are invited to stay for an informal networking reception designed to foster mentorship, collaboration and meaningful connections among clinicians, researchers, fellows, residents and trainees working in NMOSD, MOGAD and related demyelinating disorders.
This event offers a unique opportunity to engage with colleagues from across the globe, exchange ideas, and strengthen partnerships between academia, clinical practice, research and patient advocacy.
Organized by

Dr. Courtney Casserly (Western University)
Dr. Jonathan Krett (University of Calgary)
Dr. Dalia Rotstein (University of Toronto)

In partnership with The Sumaira Foundation.
Presented by
The University of Calgary, The Sumaira Foundation, University of Toronto, and Western University.
Please note: This independent event is not included in the MSToronto2026 accredited program.

Understanding Long-Term Side Effects of Steroids
2026-11-04 15:30 - 16:30 (America/New_York)
Steroids can be an important part of treatment for many rare neuroimmune conditions, but what happens when they’re used over a longer period of time? Join Dr. Amy Kunchok for a patient-friendly discussion about the potential long-term side effects of steroids, what to watch for, and how patients can work with their healthcare team to manage risks while balancing the benefits of treatment.
Wednesday, November 4
12:30 PM PT / 3:30 PM ET
https://us02web.zoom.us/webinar/register/WN_ad8Zm0X7QMyYdhKQORlrog
This webinar is designed for patients and caregivers and will provide practical information to help you better understand your treatment and advocate for your health. Those who attend live will also have the opportunity to ask Dr. Kunchok their questions! Made possible with support from Amgen.

TSF HCP Caregivers - Caregiving with Dignity
2026-11-15 11:00 - 12:00 (America/New_York) | Virtual: Global

Journée patients 2026 – Maladies auto-immunes et auto-inflammatoires rares
2026-11-21 09:00 - 17:00 (Europe/Paris) | Lille, Hauts-de-France, 97 Place Saint Hubert, Lille, 59800, France
À tous les patients et aidants touchés par des maladies auto-immunes et auto-inflammatoires rares en France et en Belgique !

Vous ou l’un de vos proches est touché par : la NMOSD, une maladie aux IgG4, la Myasthénie, la maladie de Basedow ou la MOGAD ? Vous êtes les bienvenus à notre événement le samedi 21 novembre.
Rejoignez-nous pour une journée d’information, de partage et de divertissement pour :

Rencontrer des patients, des aidants et des soignants de France et de Belgique ainsi que nos partenaires
Poser toutes vos questions en direct à des experts sur la gestion des symptômes, les traitements et thérapies, les comorbidités et bien plus encore
Découvrir les dernières avancées en matière de recherche

L’après-midi, des ateliers et des discussions ont été spécifiquement prévus avec des professionnels de santé et des intervenants pour chaque maladie.
Cet événement est organisé en collaboration avec le professeur Hélène Zéphir (HU de Lille) et en partenariat avec les associations AFR-IgG4, AMIS, et le groupe Myasthénie de l’AFM-Téléthon.
https://www.eventbrite.com/e/1992136024476?aff=oddtdtcreator
L’inscription est gratuite et un repas sera servi. Nous avons hâte de vous retrouver !
L’équipe de The Sumaira Foundation France et Belgique

LA Patient Day for Rare Neuroinflammatory and Related Disorders
2026-12-05 10:00 - 17:00 (America/Los_Angeles)
We’re coming to Los Angeles!
TSF is inviting patients and caregivers impacted by rare neuroinflammatory & related disorders from California & the west coast!
Are you or your loved one impacted by: AE*, CIDP*, MG*, MOGAD*, neurosarcoidosis, or NMOSD*? You’re invited to our event on Saturday, December 5th.
Join us for a day of education, community and fun to:

Meet local patients, partners, care-partners and clinicians
Ask experts questions in real time about symptom management, treatments and therapies, comorbidities and more
Learn about updates on the latest research and findings from local key opinion leaders

This event is being organized in collaboration with Dr. Lilyana Amezcua and Dr. Masoud Majed (USC).
Registration is free and lunch will be served.
https://www.eventbrite.com/e/la-patient-day-for-rare-neuroinflammatory-related-disorders-tickets-1989963571611?aff=oddtdtcreator
We can’t wait to see you in LA!
The Sumaira Foundation team
—
AE stands for autoimmune encephalitis
CIDP stands for chronic inflammatory demyelinating polyneuropathy
MG stands for myasthenia gravis
MOGAD stands for myelin oligodendrocyte glycoprotein antibody-associated disorder
NMOSD stands for neuromyelitis optica spectrum disorder

TSF HCP Caregivers - Medication Management
2026-12-13 11:00 - 12:00 (America/New_York) | Virtual: Global
