The Sumaira Foundation

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.

TSF Plauderstunde | HCP Germany
2023-03-08 19:30 - 20:30, 2023-02-08 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 | Danmark
2023-03-01 19:00 - 20:00, 2023-02-08 19:00 - 20:00, 2023-01-25 19:00 - 20:00 (Europe/Amsterdam) | Virtual: Danmark, Denmark

MEET YOUR EXPERTS – Triff deine Experten!
2023-02-28 10:00 - 18:00 (Europe/Brussels) | Virtual: Germany, Germany
MEET YOUR EXPERTS –
Triff deine Experten!
Zum Tag der seltenen Erkrankungen 2023
lädt NEMOS ein zum offenen Gespräch
Wann: 28. Februar 2023
Durchgängig zwischen
10 und 18 Uhr
Wie: Einfach vorbeischauen!
Online (via Zoom) ohne Anmeldung über folgenden Link: https://bit.ly/meet-NEMOS-experts
@Was?
Mit Expertinnen und Experten ins Gespräch kommen,
Fragen stellen, Gelegenheit zum offenen Austausch,
Info-Schnipsel kurz nach jeder vollen StundeFür alle Betroffenen und Interessierten
rund um die Themen NMOSD und MOGADWeitere Infos unter www.nemos-net.de
Für Rückfragen: PatientInnen@nemos-net.de

2023 Ohio Rare Disease Day Event - Cleveland
2023-02-28 08:30 - 11:00 (America/New_York) | Case Western Reserve University, Tinkham Veale Ballroom, 11038 Bellflower Road, Cleaveland, OH, 44106, United States
The Ohio Rare Action Network invites you to join us for
Rare Disease Day in Cleveland
Tuesday, February 28, 2023 at 8:30 AM
Case Western Reserve University, Tinkham Veale Ballroom, 11038 Bellflower Road, Cleveland, OH 44106
You’re invited to join patients, caregivers, and other rare disease advocates as we raise awareness and celebrate the rare disease community! The Ohio Rare Action Network and the Connor B. Judge Foundation will be hosting Ohio Rare Disease Day 2023 in Cleveland on Tuesday, February 28th. Along with NORD, The Connor B. Judge Foundation and The Sumaira Foundation, this year’s event is also hosted and sponsored by the Research Institute for Children’s Health.
The event will include networking, followed by an informational program. The program will include a series of short presentations, which will address the challenges surrounding the diagnosis and treatment of rare diseases and lack of approved treatment options. The program will also feature the patient perspective and highlight advocacy and legislative efforts.

Rare Disease Day at NIH 2023
2023-02-28 08:00 - 17:00 (America/New_York) | Virtual: United States, United States
Rare Disease Day®(link is external) takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. Since 2011, NCATS and the NIH Clinical Center have sponsored Rare Disease Day at NIH as part of this global observance. Rare Disease Day at NIH aims to raise awareness about rare diseases, the people they affect, and NIH collaborations that address scientific challenges and advance research for new treatments.
The goals of Rare Disease Day at NIH are to:

Demonstrate the NIH commitment to helping people with rare diseases through research.
Highlight NIH-supported rare diseases research and the development of diagnostics and treatments.
Initiate a mutually beneficial dialogue among the rare diseases community.
Exchange the latest rare diseases information with stakeholders to advance research and therapeutic efforts.
Shine a spotlight on stories told by people living with a rare disease, their families and their communities.
Bring together a broad audience including patients, patient advocates, caregivers, health care providers, researchers, trainees, students, industry representatives and government staff.

Event Details
Rare Disease Day at NIH will be held in person at NIH Main Campus (Natcher Conference Center) on Tuesday, Feb. 28, 2023, from 9 a.m. to 5 p.m. EST. There also will be a virtual livestream via NIH VideoCast with the event archived for replay afterward. The event agenda features panel discussions, rare diseases stories, exhibitors and scientific posters. The event is free and open to the public.
Partners in Planning
Planning committee members includes representatives from the following organizations:

NCATS
NIH Clinical Center
National Cancer Institute
National Heart, Lung, and Blood Institute
National Institute on Alcohol Abuse and Alcoholism
National Institute of Neurological Disorders and Stroke
Rare Diseases Clinical Research Network’s Coalition of Patient Advocacy Groups
U.S. Food and Drug Administration (FDA)
The Children’s Inn at NIH
EveryLife Foundation for Rare Diseases
National Organization for Rare Disorders
United BioSource LLC

NCATS and Rare Diseases Research
Progress in data science and an increased understanding of disease genetics lead experts to agree that more than an estimated 10,000 rare diseases are affecting about 30 million people in the United States. Most of these people are children. In all, nearly 10% of the U.S. population have a rare disease. Rare diseases often are difficult to diagnose — it can take years. Even after an accurate diagnosis, treatment often is not available because fewer than 500 rare diseases have FDA-approved treatments. Research led by NCATS suggests that nationwide medical costs for individuals with rare diseases are likely as high as those faced by people with common diseases, such as cancer and heart failure.
NCATS is committed to using research to address the public health crisis presented by rare diseases. NCATS’ Division of Rare Diseases Research Innovation (DRDRI) facilitates and coordinates NIH-wide research activities, which have the potential to speed development of treatments for multiple rare diseases and ultimately help more patients more quickly. Learn more about DRDRI and NCATS’ rare diseases research programs and access shareable resources to help raise awareness about rare diseases.

SRNA Rare Disease Day
2023-02-28
Join us for a Rare Disease Day celebration. Connect with others and listen in during our #RareRoundtable conversation.

Public Meeting: FDA Rare Disease Day 2023
2023-02-27 09:00 - 16:45 (America/New_York) | Virtual: United States, United States
Webcast Information
Join the webcastExternal Link Disclaimer to watch the livestream on February 27 beginning at 9 a.m. (ET).
Summary
FDA will host Rare Disease Day, a virtual public meeting, on February 27, 2023, 9:00 am – 4:45 pm ET, in global observance of Rare Disease Week. This year’s theme is “Intersections with Rare Diseases – A patient focused event.” Participants will have the unique opportunity to:
Hear directly from the FDA on initiatives to advance medical product development for rare diseases.
Engage with the FDA to provide your perspectives as a patient, caregiver or family member.
Understand considerations and challenges associated with clinical trials in small populations.
Hear from medical students on rare disease education for medical professionals.
Public Docket
Stakeholders are invited to provide their perspectives on the discussion questions through the public docket. All comments must be identified with the docket number FDA-2022-N-3072-0001 through April 7, 2023.
Contact
OOPDOrphanEvents@fda.hhs.gov | 301-796-7634
Office of Clinical Policy and Programs, Office of Orphan Products Development

TSF's Human Collective Project Meetings
2023-02-16 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, MOGAD und MS: Gemeinsamkeiten und Unterschiede
2023-02-13 12:00 - 13:30 (America/New_York) | Virtual: Germany, Germany
Herzliche Einladung zum ersten Live-Webinar “NMOSD, MOGAD und MS: Gemeinsamkeiten und Unterschiede” der Sumaira-Foundation für die deutschsprachige NMOSD & MOGAD Community am Montag, den 13. Februar, mit Dr. Joachim Havla, Neurologe und NMOSD/MOGAD-Spezialist an der Ludwig-Maximilians-Universität München. Dr. Havla wird die Gemeinsamkeiten und Unterschiede zwischen NMOSD, MOGAD und die Abgrenzung gegenüber der Multiplen Sklerose erläutern. Fragen in Echtzeit sind mehr als willkommen!

TSF's Human Collective Project | Global Meetings
2023-02-11 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.

TSF's Human Collective Project Meetings
2023-02-02 20:00 - 21:00, 2023-01-19 20:00 - 21:00 (America/New_York) | Virtual: Danmark, Denmark

Young People’s Webinar | Connecting MS, NMOSD & MOGAD: Sharing Knowledge and Experiences to Strengthen Our Communities
2023-01-26 17:00 - 18:00 (Europe/Brussels) | Virtual: Danmark, Denmark
There are a number of different autoimmune disorders with similar features to Multiple Sclerosis (MS), such as neuromyelitis optica spectrum disorder (NMOSD) and myelin oligodendrocyte glycoprotein antibody disorder (MOGAD).
These diseases share striking similarities that ultimately affect the way in which our communities understand and manage the diagnosis. Hence, it is of utmost importance for young people with MS to learn more about them as well as connect with the communities as they share similar experiences and questions for the future.
The webinar will focus on:
– Sharing Knowledge, where Dr. Sara Mariotto‬ will introduce NMOSD & MOGAD as well as describe the similarities and differences between MS, NMOSD & MOGAD from an expert perspective.
– Sharing Experiences, where Sumaira Ahmed will share her own NMOSD story and how she built communities of support for patients and their caregivers by developing the Sumaira Foundation.

TSF's Human Collective Project Global Meetings
2023-01-14 10:00 - 11:00 (America/New_York) | Virtual: Danmark, Denmark
We’re excited to bring NMOSD/MOGAD patients + caregivers from around the globe together for our 1st global support group meeting of 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.

TSF Plauderstunde | HCP Germany
2023-01-11 19:30 - 20:30 (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/MOG-AD. The program came into existence during the height of the COVID-19 pandemic in 2020 when most NMOSD/MOG-AD 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/MOG-AD 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.

Understanding Clinical Trials for MOGAD & the Importance of Patient Participation
2023-01-06 09:00 - 10:00 (America/New_York) | Virtual: Danmark, Denmark
You’re invited to join TSF’s 1st live webinar of 2023 – Understanding Clinical Trials for MOGAD & the Importance of Patient Participation – on Friday, January 6th featuring Dr. Michael Levy who will share updates about ongoing clinical trials for patients living with MOGAD. Additionally, we will discuss the importance and value of patient participation in clinical research and trials for novel therapies. Attendees will have the opportunity to ask Dr. Levy questions in real time.
This webinar will be recorded and available for replay on TSF’s Facebook and YouTube libraries.
This webinar is sponsored by UCB.

TSF's Human Collective Project Meetings
2023-01-05 20:00 - 21:00, 2022-12-22 20:00 - 21:00 (America/New_York) | Virtual: Danmark, Denmark
The Human Collective Project (HCP) is TSF’s support group meeting offered to anyone who has been affected/impacted by NMOSD/MOG-AD. The program came into existence during the height of the COVID-19 pandemic in 2020, when most NMOSD/MOG-AD 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/MOG-AD 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.

SM, NMOSD e MOGAD: Somiglianze e Differenze
2022-12-14 12:00 - 13:30 (America/New_York) | Virtual: Danmark, Denmark
Unisciti a noi mercoledì 14 dicembre per il 1° webinar italiano della Fondazione Sumaira con la dott.ssa Sara Mariotto, neurologa ed esperta di NMOSD/MOGAD che discuterà e risponderà alle domande sulle somiglianze e le differenze tra NMOSD e MOGAD.
I partecipanti avranno l’opportunità di porre domande alla Dr. ssa Mariotto dal vivo ed in italiano. Il webinar sarà registrato e sarà disponibile per essere rivisto sul canale YouTube e Facebook di TSF.
Questo evento è reso possibile da una sponsorizzazione per la formazione ed il supporto ai pazienti di Horizon Therapeutics.

TSF Book Club | "Being Mortal" by Atul Gawande
2022-12-13 20:00 - 21:00 (America/New_York) | Virtual: Danmark, Denmark
You’re invited to join TSF’s next book club meeting on November 29th, during which we’ll discuss “Being Mortal” by Dr. Atul Gawande.
From Atul Gawande, a book that has the potential to change medicine – and lives.

Through eye-opening research and gripping stories of his own patients and family, Gawande reveals the suffering this dynamic has produced. Nursing homes, devoted above all to safety, battle with residents over the food they can eat and the choices they are allowed to make. Doctors, uncomfortable discussing patients’ anxieties about death, fall back on false hopes and treatments that shorten lives instead of improving them. And families go along with all of it.

SRNA Young Adults Group Meeting
2022-12-03 12:00 - 17:00 (America/New_York) | Virtual: Danmark, Denmark
Join us for an online social hour hosted by Aidan M. for those in their 20’s and 30’s with ADEM, AFM, MOGAD, NMOSD, ON, or TM! Connect with others and discuss what it’s like living with a rare neuroimmune disorder during the transitions of young adulthood. Ask questions, share your stories, or just listen – everyone is welcome.
Please think of this as a virtual coffee hour, where we will have informal conversations and create community among younger folks with disorders under the SRNA umbrella. Come connect with others and discuss what it’s like living with a rare neuroimmune disorder. Ask questions, share your stories, or just listen – everyone is welcome.

NMOSD/MOGAD Global Support Group Meeting
2022-12-03 10:00 - 11:00 (America/New_York)
We are excited to launch TSF’s first-ever global Human Collective Project meeting! Join us on Saturday, December 3rd at 10 AM EST / 4 PM CET for a support group meeting with NMOSD/MOGAD patients and caregivers from all over the world.
This special monthly group will be hosted by, Candice Galvan, NMOSD Caregiver, Colorado Ambassador, and HCP Program Manager. This meeting will be conducted in English.
To register, visit https://tinyurl.com/TSFHCPglobal
