How We Support The MOG-AD Community
The MOG Project is devoted to raising awareness, educating doctors, patients and caregivers, and advancing research to support those suffering from MOG-AD. 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 MOG-AD
- Raise funds (big or small) to support MOG-AD related research.
The idea of The MOG Project was born in 2017 by Julia Lefelar and her daughter Kristina Lefelar because of Julia’s diagnosis of MOG Antibody Disease (MOG-AD) and the lack of information to understand and come to terms on her future. Julia had suffered for many years with undiagnosed symptoms of MOG-AD. Her most acute, repeated attacks of Optic Neuritis started in 2014. She was finally diagnosed with MOG-AD in November of 2017. At that time, MOG -AD was barely on the map and there was little information, if any, 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 Cynthia Albright, another MOG-AD patient, and Amy Ednie jumped in to make the commitment to make a difference. 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 MOG-AD community willing to devote their time and effort to The MOG Project to make sure that MOG-AD 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.