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In 2014, The Sumaira Foundation (TSF) launched to raise awareness of NMOSD and create a community of people brought together through shared experiences. As our network of patients, caregivers and supporters grew, the science was evolving…
Researchers found patients who exhibited the same signs and symptoms as NMOSD, but the antibody and disease process differed. These patients’ immune systems create antibodies that attack the myelin oligodendrocyte glycoprotein (MOG) and damage the nerves.
Doctors have now acknowledged that myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) is its own diagnosis. Many patients in our NMOSD community have been reevaluated and given the MOGAD diagnosis. Due to its distinct pathophysiological features, MOGAD is emerging as its own disease entity; the presence of autoantibodies against MOG distinguishes it from related neuroinflammatory and demyelinating disorders. MOGAD is a rare neuroimmune condition that targets the MOG protein which is located on the surface of myelin sheaths in the central nervous system. Common symptoms include vision loss, color vision deficiency, paralysis, paraparesis, weakness, numbness, spasticity, vomiting, hiccups, seizures, and bladder/bowel dysfunction.
April is MOGAD Awareness Month and we’re excited to share all of the ways you can get involved and help illuminate myelin oligodendrocyte glycoprotein antibody associated disorder (MOGAD).
In 2024, TSF is turning 10! To celebrate the Foundation’s milestone during MOGAD Awareness Month, we want to share your MOG milestone that you’re most proud of while living with or caring for someone with MOG.
To share your milestone with us, email [email protected] with a vertical photo that illustrates your milestone, 2-3 sentences, and links to your social media channels so we can tag you!
For example, Brian’s #MOGmilestone post says: My MOG journey started in 2015 when I suddenly went blind and was paralyzed. I shared my goals with my physical therapist – I wanted to walk, ride my bike, and go standup paddling. Two years later, I lay on my belly, paddled out to the middle of a lake on a paddleboard, and slowly pushed myself up into a standing position. My paddle cut through the water, and I began gliding across the surface. A few strokes later, I lost my balance and fell into the lake. I resurfaced smiling. I realized the goals were not about walking or standup paddleboarding; they were about the hours of stretching, building muscles, and developing balance. It was about setting goals and being resilient.”
At TSF, we always say that knowledge is power. To be your own best advocate or for your loved ones, learn about all things MOGAD by accessing any of the resources below. Our website is now available in over 25 languages so anyone visiting our website can access information, stories and resources in the language they are most comfortable with.
Sunday, April 7th | NMOSD, MOGAD, MS の類似点と相違点を理解する (Japanese) featuring Prof. Kazuo Fujihara (Fukushima Medical University School of Medicine)
Saturday, April 20th | Let’s Talk About Cannabis: 4/20 Edition (English) featuring Dr. Aaron Boster (The Boster Center for Multiple Sclerosis: MS Center)
Thursday, April 25th | Diferencias entre Esclerosis múltiple, NMOSD y MOGAD (Spanish) featuring Dr. Carlos Navas (Clínica Universitaria Colombia)
We invite patients, caregivers and their loved ones to join any of our upcoming virtual support group meetings led by TSF Ambassadors.
Sponsored by UCB Pharma, this clinical trial marks the first-ever clinical trial specifically for adults living with MOGAD. cosMOG is a Phase 3 (NCT05063162) study designed to assess the efficacy, safety, and tolerability of rozanolixizumab for treatment of adult participants with MOGAD.
Sponsored by Roche, the main objective of the study is to evaluate the efficacy of satralizumab compared with placebo based on time from randomization to the first occurrence of an adjudicated MOGAD relapse in the double-blind (DB) treatment period.
US MOGAD Ambassadors: Brian (Pennsylvania), Crystal (Hawaii), Nakeshia (Ohio), Lauren (Wisconsin) and Avery (Missouri)
International MOGAD Ambassadors: Nelly (France), Yoka (The Netherlands), Silvia (Italy), Bozena (Poland), Anass (France), Viviana (Italy) and Laura (UK)
#TSFMOG2024 social media graphics are available in Arabic, Danish, Dutch, English, French, German, Hindi, Italian, Portuguese, Spanish, Swedish and Turkish. Join the #MOGvement by sharing our graphics on your social media accounts!
To download a graphic, right click and choose “Save Image As.” Don’t forget to tag us and use the hashtags #TSFMOG2024 and #MOGmovement
