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Posted by: The Sumaira Foundation in News & Announcements
November 13, 2019 – The Sumaira Foundation for NMO (TSF) and The MOG Project announced their partnership on November 13, 2019 in their shared mission to raise awareness for myelin oligodendrocyte glycoprotein antibody-associated disease (MOG-AD).
Since its nascence, TSF has focused on raising awareness and funds for neuromyelitis optica. In mid 2019, the organization shared its plans to allocate efforts and funds to illuminate the darkness of MOG-AD. To support the execution of this new initiative, TSF welcomed Dr. Bart Chwalisz, attending neurologist at Massachusetts General Hospital, to its medical board who will serve as a key figure in disseminating MOG-AD disease-related data through the foundation.
Established in 2017, The MOG Project is an advocacy organization devoted to raising awareness, educating doctors, patients, and caregivers, and advancing research to support those suffering from MOG-AD. The organization’s focus is to provide accurate information, create a trusted community, collaborate with experts in the field, and fundraise to support MOG-AD-related research.
Scheduled to launch on November 22, 2019, the inaugural project of the partnership is MOGmentum, a series of easy-to-understand visuals aimed to educate the lay public about MOG-AD via social media. Though even more rare than NMO, MOG-AD prevalence is increasing as research and awareness continues to grow; there still remains confusion among both the patient and medical community regarding the difference between NMO and MOG-AD.
Motivated by the new relationship and MOGmentum, The MOG Project’s co-founder and executive director, Julia Lefelar, says,
“We are so excited to collaborate with TSF on this project that will reach so many members of our small but mighty community! This eye-catching series is designed to inspire patients of MOG-AD to absorb everything they should know; it’s prevalence, symptoms, diagnosis, treatment options, and more! We hope the audience will find the series to be truly MOGnificent!”
“The identification of the MOG antibody was the first step towards an explanation of a disease that turns out to be an important cause of NMOSD-like presentations and other attacks of neurologic disease such as acute demyelinating encephalomyelitis (ADEM). For patients afflicted with atypical optic neuritis, transverse myelitis, ADEM and other acute neurologic problems who previously seemed to “fall through the cracks” without a clear diagnosis – and for the doctors who treat them – this is a moment of hope that we may be getting closer to an understanding of this disease, and how to treat it. We are enthusiastic about this new collaboration and hope that it will raise awareness among doctors and the patient community about this important cause of vision loss and neurologic disability,” adds Dr. Chwalisz.
TSF and The MOG Project are hopeful that their partnership will amplify MOG-AD awareness while bringing much-needed attention and education to the disease and its community.
