The Sumaira Foundation

TSF Plauderstunde | HCP Germany
2023-05-10 19:30 - 20:30, 2023-04-12 19:30 - 20:30, 2023-03-08 19:30 - 20:30 (Europe/Amsterdam) | Virtual: Germany, Germany
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.

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

HCP Italia
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.

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).

TSF's Human Collective Project Meetings
2023-04-27 20:00 - 21:00, 2023-04-13 20:00 - 21:00, 2023-03-30 20:00 - 21:00, 2023-03-16 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.

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.

HCP South Africa
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.

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 Human Collective Project | Danmark
2023-04-05 19:00 - 20:00, 2023-03-01 19:00 - 20:00 (Europe/Amsterdam) | Virtual: Danmark, Denmark

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

2023 Virtual Legislative Lobby Day
2023-03-29 | Virtual: United States, United States
Join autoimmune patient advocates nationwide on March 29, 2023, for the National Coalition of Autoimmune Patient Groups’ first virtual Congressional Fly-in Day. Advocates will meet virtually with legislators and staff to discuss important issues, including improving patient access and research funding. Whether you’re a veteran advocate or looking to get involved in legislative advocacy for the first time, this is an incredible opportunity to make a difference for the autoimmune patient community.
We will be calling upon Congress to establish an Office of Autoimmunity within the Office of the Director of the National Institutes of Health. Read the letter we sent to the Senate and House Appropriations Committee encouraging them to include this in the FY2023 Appropriations bill.
Frequently Asked Questions
What is a Lobby Day?
A fly-in or lobby day is when constituents from across the country come together to advocate to their congressional lawmakers on behalf of a common cause or interest.
Who should participate?
Autoimmune patients, care partners, family and friends, health care professionals, medical and scientific professionals, and anyone with an interest in and passion for changing the future of autoimmune disease is encouraged to participate and become an advocate.
Is there a cost to participate?
There is no cost to participate.
How will we meet with legislators and staff?
All virtual meetings will be conducted via Zoom or another video conference platform.
Do I need previous advocacy experience?
Definitely not! We will provide training and talking points.
How can I prepare?
Prior to the event, we will hold a training session with participants. The training session will help advocates better understand how to speak to elected leaders to get their point across and will use role-playing to demonstrate. Remember: a convincing and compelling case will gain more traction than a shouting match any day.
We will also provide talking points and key messages as guidance.

Le Projet Collectif Humain
2023-03-24 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.

NMOSD, MOGAD en MS: Overeenkomsten en Verschillen
2023-03-17 20:00 - 21:00 (Europe/Brussels) | Virtual: Global
Neem vrijdag 17 maart van 20.00-21.00 uur deel aan het allereerste Nederlandstalige webinar “In gesprek met deskundigen” (“From the Experts”). Dit webinar wordt georganiseerd door de Sumaira Foundation.
Dr Barbara Willekens zal spreken over overeenkomsten en verschillen tussen NMOSD, MOGAD en MS.
Dr. Willekens is als neurologe verbonden aan het UZA, het Universitair Ziekenhuis Antwerpen. Ze is gespecialiseerd in Multiple Sclerose (MS) en ontstekingsziekten van het zenuwstelsel.
Deelnemers krijgen tijdens deze LIVE presentatie de mogelijkheid om vragen te stellen aan Dr. Willekens. Het webinar zal worden opgenomen en is later te bekijken via www.sumairafoundation.org en via het YouTubekanaal van de Sumaira Foundation.
Dit gratis webinar wordt mogelijk gemaakt door subsidie van het “patient education grant” programma van Horizon Therapeutics.

TSF Book Club | "Shifting Into High Gear" by Kyle Bryant
2023-03-14 19:00 - 20:00 (America/New_York) | Virtual: United States, United States
You’re invited to join TSF’s next book club meeting on March 14th , during which we’ll discuss “Shifting Into High Gear” by Kyle Bryant.

Shifting Into High Gear charts the course of Kyle Bryant’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.
As you travel with Kyle during two cross-country bike rides through the American West, Texas, the Southern States, and finally to the shores of the Atlantic Ocean, the grueling rides become a compelling backdrop for a series of lessons and ruminations which embrace an alternative worldview and provide practical solutions to everyday problems. A thrilling adventure story, yes, Shifting Into High Gear is also ultimately about helping readers reinterpret the conditions of their lives and learning how positive thinking, purposeful connection, and deliberate actions can help anyone reach beyond their limits and live a bolder and bigger life no matter what the circumstance.

Deeply passionate and compassionate, Kyle uses his amazing story to teach readers how to replace the handicapping language of “disability” with the agency to build a thriving and hopeful life. He bravely exposes the shadow-side of using disabling language and asks us to commit to a collective goal of understanding disease and its emotional impact and embrace the disabled population as equal individuals. In telling his story, Kyle’s desire is that instead of viewing disease as a deficit, we would see it as another state of being—simply as a life which strikes out on a different path.

Les MOGAD et NMOSD chez l’enfant et adolescent
2023-03-14 18:00 - 19:30 (Europe/Paris) | Virtual: France, France
Rejoignez-nous le mardi 14 mars pour le prochain webinaire “From the Experts” de TSF en français avec Dr. Kumaran DEIVA, neuro-pédiatre à Paris, qui parlera et répondra aux questions sur la NMOSD pédiatrique et la MOGAD.
Les participants auront la possibilité de poser des questions au Dr Deiva en direct et en français. Le webinaire sera enregistré et disponible pour répondre sur le site Web et la chaîne YouTube de TSF.
Cet événement est soutenu par la subvention d’Horizon Therapeutics pour l’éducation des patients.

TSF's Human Collective Project | Global Meetings
2023-03-11 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 meeting 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.
