About US

How We Support The MOGAD Community

The MOG Project is devoted to raising awareness, educating doctors, patients and caregivers, and advancing research to support those suffering from MOGAD. To achieve this, our focus is to:

Provide accurate information through references to published studies, having a continual presence on social media, and creating podcasts (and other communication channels) addressing high volume concerns with renown experts
Create a trusted community, connecting people with both doctors and other patients with rare neuroimmune conditions through physical support groups as well as social media groups,
Collaborate with expert doctors, researchers and other organizations, including our partners, who support the broader spectrum of rare neuroimmune disorders including MOGAD
Raise funds (big or small) to support MOGAD related research.

Our History

The idea of The MOG Project was born in 2017 when Julia was diagnosed with MOG Antibody Disease (MOGAD) and discovered a significant lack of information to understand and come to terms on her future. Julia had suffered for many years with undiagnosed symptoms of MOGAD, but her most acute, repeated attacks of Optic Neuritis started in 2014. At that time, MOGAD was barely on the map and there was little information with questionable accuracy for patients, doctors or caregivers on the disease symptoms, diagnosis, prognosis, and treatment options. The MOG Project was formally kicked off in December of 2017 when Julia, her daughter, Kristina Lefelar, Amy Ednie and another patient made a commitment to not let other patients go through similar feelings of hopelessness caused by lack of awareness and information. This small team found others with similar stories who were also willing to join the effort and The MOG Squad was born!

Dr. Michael Levy, Julia’s neurologist and, at the time, Assistant Professor of Neurology at Johns Hopkins, suggested that they join The Transverse Myelitis Association (TMA), now called the Siegel Rare Neuroimmune Association (SRNA) (https://wearesrna.org) as the disease should be included in their spectrum of neuroimmune diseases. The SRNA took them under their wing and allowed them to launch MOG disease advocacy as a new addition to their spectrum of rare neuroimmune diseases that they support. Since then, the group has expanded from coast-to-coast and across the Atlantic with more members of the MOGAD community willing to devote their time and effort to The MOG Project to make sure that MOGAD patients have the latest information on disease research, the best doctors and the best course of treatment. With the support of the SRNA, they helped improve information distribution through social media, podcasts, support groups and walk events. In early 2020, The MOG Project became a non-profit organization on its own, partnering with the SRNA and the Sumaira Foundation to ensure strength in achieving their aligned missions.