In 2017, Julia Lefelar was diagnosed with MOG antibody disease, a rare neuroinflammatory condition that had no dedicated diagnostic code, few doctors who recognized it, and almost no organized research behind it. A year later, she founded The MOG Project to change that.

Myelin Oligodendrocyte Glycoprotein Antibody Disease, known as MOGAD, occurs when the body’s own antibodies attack myelin, the protective coating around nerve fibers in the optic nerves, brain, and spinal cord. It disproportionately affects children, and its symptoms, vision loss, weakness, seizures, can be mistaken for other conditions, delaying treatment for patients who need it fast.

The MOG Project is a national patient advocacy organization built around four goals: raising public awareness, educating doctors on how to recognize and treat MOGAD, funding research toward a cure, and supporting patients and caregivers navigating a diagnosis most physicians have never seen before.

A Diagnosis Code That Didn’t Exist

Before 2023, MOGAD had no ICD-10 diagnostic code of its own, out of more than 150,000 codes covering outpatient and inpatient care in the United States. Without one, insurance claims, hospital records, and research studies had no reliable way to track the disease at all.

The MOG Project worked with Dr. Cristina Santoro of Children’s Hospital Los Angeles and the American Academy of Neurology to petition the CDC directly. In March 2023, the new code was approved. Code G37.81 became effective that October, giving MOGAD patients, for the first time, a diagnosis that shows up correctly in their own medical charts.

Funding Research for Rare

Because MOGAD was only formally distinguished from other neuroimmune conditions in recent years, research funding for it has been scarce. The MOG Project’s Research for Rare program exists to close that gap, awarding two kinds of grants each cycle:

• Apollo Grant: funds early hypothesis-testing and pilot data collection, giving researchers the preliminary evidence they need to compete for larger grants down the line.
• Accelerator Grant: funds the infrastructure and technology behind future MOGAD studies, from data systems to lab tools.

The program has distributed as much as $85,000 in a single cycle across two to four awards. In 2025, an Accelerator Grant went to a team at Massachusetts General Hospital and Brigham and Women’s Hospital, including Dr. Michael Levy, to advance MOGAD research infrastructure. The MOG Project has also partnered with the Siegel Rare Neuroimmune Association and been featured by Johns Hopkins Medicine for its work connecting patients to emerging research.

A Community Called The Flock

Beyond research and medical advocacy, The MOG Project holds space for the people living with MOGAD day to day. Patients and caregivers have organized under the name “The Flock,” sharing their own stories and marking MOGAD Awareness Month each year to put a face on a disease most people, including most doctors, have never heard of.

Through Charitable’s Ambassador program, members of the MOGAD community can build their own fundraising pages, tell their own diagnosis story in their own words, and invite friends and family to fundraise on their behalf. The MOG Project is expanding that feature into its end-of-year giving drive, turning individual stories into direct support for the Research for Rare program.

Why the Work Continues

A diagnostic code and a handful of research grants are real progress, but MOGAD still has no cure and no FDA-approved treatment designed specifically for it. Every grant cycle depends on continued fundraising, and every newly diagnosed family still needs a doctor who knows what MOGAD is.

Explore more about their mission and how you can support the Research for Rare program here: The MOG Project.

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