The Sumaira Foundation

TSF’s Human Collective Project | Danmark
2023-06-07 19:00 - 20:00, 2023-04-05 19:00 - 20:00 (Europe/Amsterdam) | Virtual: Danmark, Denmark
The Human Collective Project (HCP) is TSF’s support group meetings 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 launching in 2020, we have expanded the program to offer more sessions and in multiple geographies to ensure that everyone in the NMOSD/MOGAD communities feel 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 around the world.

HCP Italia
2023-06-06 17:30 - 18:30, 2023-05-02 17:30 - 18:30 (Europe/Rome) | Virtual: Italy, Italy
The Human Collective Project (HCP) è l’incontro del gruppo di supporto di TSF offerto a chiunque sia stato colpito/colpito da NMOSD/MOGAD. Il programma è nato durante il culmine della pandemia di COVID-19 nel 2020, quando la maggior parte dei NMOSD/MOGAD si sentiva particolarmente isolata e vulnerabile al coronavirus come membri della società immunosoppressi/immunocompromessi. L’isolamento che molti di noi hanno vissuto ha svelato un grande bisogno e un’opportunità per noi di connetterci in modo significativo per offrire il nostro sostegno reciproco.
Dal 2020, abbiamo ampliato il programma per offrire più sessioni in più aree geografiche per garantire che tutti nelle comunità NMOSD/MOGAD si sentano accolti e inclusi. Come diciamo sempre, HCP è un ottimo modo per incontrare altri in circostanze simili in questa rara comunità; è uno spazio sicuro per ridere, piangere, sfogarsi, condividere vittorie, ecc. Questo programma è guidato e guidato dagli ambasciatori di pazienti e caregiver di TSF in tutto il mondo.

TSF's Human Collective Project | Global Meetings
2023-06-03 10:00 - 11:00 (America/New_York) | Virtual: United States, United States
We’re excited to bring NMOSD/MOGAD patients + caregivers from around the globe together another global support group meeting!
These meetings are a safe space led by the community for the community. No judgment, only love & support. (This meeting will be conducted in English)
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.

Double sero-negative NMOSD
2023-06-02 15:00 - 16:00 (America/New_York) | Virtual: Global
Do you or your loved one continue to test negative for the AQP4 and MOG antibodies? You are not alone!

You’re invited to attend “Double sero-negative NMOSD” on Friday, June 2nd at 12 PM PST / 3PM EST / 9 PM CET featuring Dr. Eoin Flanagan, Professor of Neurology, Chair of the Division of Multiple Sclerosis and Autoimmune Neurology, Director of the Autoimmune Neurology Fellowship and Consultant in the departments of Neurology and Laboratory Medicine and Pathology at the Mayo Clinic (Rochester, MN).

Dr. Flanagan will be in conversation with Sumaira, presenting live from the CMSC 2023 Annual Meeting in Aurora, CO. Live attendees will have the opportunity to ask Dr. Flanagan questions in real time. This webinar will be recorded and available for replay on TSF’s Multimedia Library and YouTube channel.

This educational event is made possible through a patient education grant from Horizon Therapeutics.

HCP South Africa
2023-05-30 18:00 - 19:00, 2023-04-25 18:00 - 19:00 (Africa/Johannesburg) | Virtual: South Africa, South Africa
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.

TSF's Human Collective Project Meetings
2023-05-25 20:00 - 21:00, 2023-05-11 20:00 - 21:00, 2023-04-27 20:00 - 21:00, 2023-04-13 20:00 - 21:00, 2023-03-30 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.

Le Projet Collectif Humain
2023-05-19 20:00 - 21:00 (Europe/Paris) | Virtual: France, France
The Human Collective Project (HCP) est la réunion du groupe de soutien de TSF offerte à toute personne affectée par la NMOSD ou la MOGAD. Le programme a vu le jour au plus fort de la pandémie de COVID-19 en 2020, lorsque la plupart des patients NMOSD/MOGAD se sentaient particulièrement isolés et vulnérables au coronavirus en tant que patient dit “vulnérable” de part son traitement contre ma maladie.
L’isolement que beaucoup d’entre nous avons vécu a révélé un grand besoin et une opportunité pour nous de nous connecter de manière significative pour nous offrir notre soutien les uns aux autres.
Depuis 2020, nous avons élargi le programme pour offrir plus de sessions dans plusieurs zones géographiques afin de garantir que tous les membres des communautés NMOSD/MOGAD se sentent accueillis et inclus. Comme nous le disons toujours, HCP est un excellent moyen de rencontrer d’autres personnes dans des circonstances similaires dans cette communauté rare; c’est un espace sûr pour rire, pleurer, évacuer, partager les victoires, etc. Ce programme est piloté et dirigé par les patients et soignants ambassadeurs de TSF dans le monde entier.

Het Human Collective Project
2023-05-16 19:00 - 20:00 (Europe/Amsterdam) | Virtual: Amsterdam, Netherlands
Op dinsdag 16 mei om 19:00 organiseert de Sumaira Foundation de eerste Nederlands en Vlaamse online bijeenkomst voor mensen met NMOSD of MOGAD en hun familieleden en/of dierbaren.

U bent van harte welkom om deel te nemen en ervaringen uit te wisselen en elkaar te ondersteunen in een veilige omgeving.

Aanmelden voor deze bijeenkomst kan via: ZOOM

TSF Plauderstunde | HCP Germany
2023-05-10 19:30 - 20:30, 2023-04-12 19:30 - 20:30 (Europe/Amsterdam) | Virtual: Germany, Germany

TSF's Human Collective Project | Global Meetings
2023-05-06 10:00 - 11:00 (America/New_York)
These meetings are a safe space led by the community for the community. No judgment; only love & support. (This meeting will be conducted in English)
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.

EMSP Annual Conference 2023
2023-05-04 - 2023-05-07
We are glad to invite you to save the date for the EMSP Annual Conference 2023, to be held under the theme of Social Policies between 4-7 May 2023 in Helsinki, Finland.
Held as an in-person event co-hosted by the Finnish MS Society (Neuroliito), the conference will offer the latest MS developments, expert insights, and networking with the community.
If interested, please pencil the following dates into your calendar:
Thursday, 4th May 2023 – EMSP Annual General Meeting
Friday, 5th May 2023 – EMSP Annual Conference – Day 1
Saturday, 6th May 2023 – Day 2
Sunday, 7th May 2023 – Young People’s Festival

Rare Drug Development Symposium 2023: Collaborate: Go Farther, Together
2023-05-01 - 2023-05-03 | Sheraton Downtown, 201 N 17th St, Philadelphia, PA, 19103, United States
Join us May 1-3, 2023 in Philadelphia, Pennsylvania for the RARE Drug Development Symposium 2023

Collaboration is the foundation of success in rare disease research. Knowing who to work with, what strategies to use, and how to prepare for discussions can help you overcome barriers posed by small populations and limited funding.

At the Rare Drug Development Symposium (RDDS) 2023, a partnership between Global Genes and the Orphan Disease Center of the University of Pennsylvania, you’ll connect to rare disease advocacy leaders, researchers, clinicians, industry professionals and policy developers who will share their experience and provide you with models to help your community push forward. This 2-day, in-person only event includes dynamic presentations, followed by workshops and expert office hours that will enable you to:
Create A Comprehensive Research Strategy
Understand the end-to-end process of drug discovery and development for rare disease and participate in a workshop where you’ll analyze your community’s potential and needs.
Leverage the Power of Data
What makes data valid and reliable? Once you have invested in a registry, what partnership models can help you move the needle toward translational research?
Use AI for Drug Discovery and Repurposing
Find out how artificial intelligence is being used to transform an often complex, decades-long-mission into a more efficient process, reducing the timeline and cost to bring therapies to patients.
Understand Regulatory Considerations
Whether your organization is local or global, regulatory guidelines must be taken into account at each step. Learn how to navigate the requirements through case studies and expert advice.
Who should attend:

Patient Advocacy Group leaders
Patients
Members of the rare disease community who want to learn more about the drug development process, the unique ways this applies to the development of therapeutics for rare diseases, and how they can engage with the process
Clinicians and researchers focused on rare disease therapeutic targets

View 2022 Highlights
To learn more about the 2022 Symposium, read the summary report here. We look forward to seeing you at the 2023 Symposium.
A Year-Long Initiative in Rare Drug Development
In addition to activities surrounding the RARE Drug Development Symposium in June, Global Genes is providing educational resources to help advocates and organizations become better equipped to work with researchers and industry partners throughout the drug development process. This includes:

Rare Research Roadmap: This toolkit was designed to help advocates, individuals, families, and organizations better understand some of the potential routes to treatment and some of the key concepts that are part of these processes to work with researchers and industry partners throughout the drug development process.

Download Your Copy Of The Rare Research Roadmap And Toolkit

Watch webinars and videos of experts that happened before and after the 2022 RARE Drug Development Symposium.

2022 Webinar 1

2022 Webinar 2

2022 Webinar 3

RDDS 2022: Value Of Collaboration

RDDS 2022: Challenges For Rare Disease

Cabaret for A Cause
2023-04-29 12:00 - 13:00 (America/New_York) | Virtual: Global
In celebration of NMOSD & MOGAD Awareness Months, TSF is pleased to present “Cabaret for a Cause,” a dance class taught by professional choreographers / show girls from a world-renowned cabaret in Paris, France.
Emma Castel and Deborah Lettieri will be teaching the class for both standing and seated attendees!
100% of proceeds will be donated towards research for neuromyelitis optica spectrum disorder (NMOSD) and myelin oligodendrocyte glycoprotein antibody disorder (MOGAD).

NMOSD y MOGAD, Perlas en el Diagnóstico y Opciones para el Tratamiento
2023-04-27 16:00 - 17:00 (America/New_York) | Virtual: Global
Está invitado a asistir a la videoconferencia “NMOSD y MOGAD, Perlas en el Diagnóstico y Opciones para el Tratamiento” el viernes 27 de abril a las 2:00 pm México / 4:00 pm Venezuela / 5:00 pm Argentina. Médicos especialistas de 3 diferentes países de Latinoamérica unen esfuerzos para abordar temas de interés común para todos.
“Perlas en el Diagnóstico Diferencial (EM, NMOSD, MOGAD)”, Dr. Edgar Carnero Contentti.
“Tratamiento con Eculizumab, Satralizumab, Inebilizumab en NMO”, Dra. Sarah Vargas.
“Impactos Socioeconómicos de la Enfermedad y Acceso Entre Fronteras”, Dr. José Flores Rivera.
Los asistentes conectados a la videoconferencia tendrán la oportunidad de hacer preguntas a los tres doctores en tiempo real. Esta conferencia web se grabará y estará disponible para su reproducción, tanto en la biblioteca multimedia, como en el canal de YouTube de The Sumaira Foundation.
Este evento educativo es posible gracias a una subvención para la educación del paciente de Horizon Therapeutics.

MOGAD : l'importance de la participation des patients aux essais cliniques
2023-04-25 20:00 - 21:30 (Europe/Paris) | Virtual: France, France
Venez participer à notre prochain webinaire – MOGAD : l’importance de la participation des patients aux essais cliniques – le mardi 25 avril à 20 heures avec le docteur Romain Marignier, professeur de neurologie et responsable du centre MIRCEM de Lyon.
Il partagera avec nous les dernières actualités sur les essais cliniques en cours pour les patients vivant avec la MOGAD en direct de l’American Academy of Neurology. Nous discuterons avec lui de l’importance de la participation des patients à la recherche clinique et aux essais de nouvelles thérapies.
Vous pourrez poser des questions au Pr Marignier en direct.
Ce webinaire sera enregistré et pourra être retrouvé sur la chaîne YouTube de The Sumaira Foundation, la bibliothèque Facebook et la galerie multimédia du site web de TSF.
Ce webinaire est rendu possible grâce au soutien institutionnel du laboratoire UCB.

6th Annual TSF Gala
2023-04-22 20:00 - 23:00 (America/New_York) | The Newbury Boston, 1 Newbury St, Boston, MA, 02116, United States
You are invited to attend The Sumaira Foundation’s
6th Annual Gala
Saturday, April 22, 2023 at 8 PM at The Newbury Boston
This event is black-tie optional.
We’ve set an ambitious goal to raise
$375,000
Click here to view the research we’ve been able to fund thanks to you!

NMOSD et MOGAD: échanges autour de la vie intime, affective et sexuelle
2023-04-21 20:00 - 21:30 (Europe/Paris) | Virtual: France, France
Avec bienveillance, ouverture d’esprit, empathie, venez échanger avec TSF France et Delphine Mutot sur ce qu’est pour vous la vie intime, affective et sexuelle. Sentez-vous libre de poser toutes les questions que vous souhaitez, et d’utiliser les mots avec lesquels vous êtes à l’aise. Pas de chichi entre nous!
Retrouvez-nous le 21 avril 2023 à 20 heures.
Cet événement est soutenu par les subventions d’Horizon Therapeutics et Alexion pour l’éducation des patients.

TSF's Human Collective Project | Global Meetings
2023-04-15 10:00 - 11:00 (America/New_York)
We’re excited to bring NMOSD/MOGAD patients + caregivers from around the globe together for our global support group meetings in 2023!
These meetings are a safe space led by the community for the community. No judgment; only love & support. (This meeting will be conducted in English)
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.

Meet the Author | Kyle Bryant, "Shifting Into High Gear"
2023-04-12 19:00 - 20:30 (America/New_York) | Virtual: Global
TSF is pleased to invite you to an exclusive “Meet the Author” fireside chat between Sumaira and Kyle Bryant, an author, athlete, speaker, and spokesperson for Friedreich’s Ataxia Research Alliance (FARA).
“Shifting Into High Gear” charts the course of Kyle’s transformation as he journeys on a recumbent tricycle across the United States in the throes of Friedreich’s ataxia, a life-shortening and disabling disease. Full of humor and reflection, it’s a heroic journey of a man driven to reframe the language of disease through action and service.
Attendees will have the opportunity to ask Kyle questions in real-time. Registration is required.

Pediatric MOGAD & NMOSD
2023-04-12 12:00 - 13:00 (America/New_York) | Virtual: United States, United States
You’re invited to attend “Pediatric MOGAD & NMOSD” on Wednesday, April 12th at 12:00 PM EDT featuring Dr. Brenda Banwell, Chief of Child Neurology and Co-Director of the Neuroscience Center at the Children’s Hospital of Philadelphia, Professor of Neurology and Pediatrics, and Grace E. Loeb Chair in Neuroscience at the Perelman School of Medicine, University of Pennsylvania.
Live attendees will have the opportunity to ask Dr. Banwell questions in real time. This webinar will be recorded and available for replay on TSF’s Multimedia Library and YouTube channel.
This educational event is made possible through a patient education grant from Horizon Therapeutics.

TSF's Patient Day for NMOSD/MOGAD in Dallas
2023-04-01 09:00 - 16:00 (America/North_Dakota/Center) | Marriott Uptown Dallas, 3033 Fairmount St, Dallas, TX, 75201, United States
TSF is inviting all NMOSD/MOGAD patients, caregivers, friends and family in Texas to join us for an exclusive meetup!
In collaboration with Dr. Benjamin Greenberg at UT Southwestern Medical Center, The Sumaira Foundation is organizing a special event dedicated to NMOSD/MOGAD patients, caregivers and clinicians on Saturday, April 1st, 2023 at the Marriott Dallas Uptown.
PLUS! We’ll be joined by special guest and celebrity chef, Christine Ha! Christine was diagnosed with NMOSD after experiencing severe vision loss in 2003. Christine was the first blind contestant on MasterChef and the winner of its third season in 2012. In 2023, Christine is a proud chef, writer and TV host.
TSF’s goals for this event include:

meet local NMOSD/MOGAD patients, caregivers and clinicians in the Texas region
provide updates on the latest research and findings
facilitate connections and meaningful discussions for the NMOSD/MOGAD community
enable patients/caregivers to ask experts questions in real time
learn more about The Sumaira Foundation’s mission and ways to get involved to illuminate the darkness of NMOSD/MOGAD

Join us for a day of connection, education and community. This is a free event with heavy hors d’oeuvres and an open bar.
We’re excited to meet you!
Hugs, Sumaira

Het Human Collective Project
2023-03-31 19:00 - 20:00 (Europe/Amsterdam) | Virtual: Amsterdam, Netherlands
Op dinsdag 31 maart om 19:00 organiseert de Sumaira Foundation de eerste Nederlands en Vlaamse online bijeenkomst voor mensen met NMOSD of MOGAD en hun familieleden en/of dierbaren.

U bent van harte welkom om deel te nemen en ervaringen uit te wisselen en elkaar te ondersteunen in een veilige omgeving.

Aanmelden voor deze bijeenkomst kan via: ZOOM
