When one person found a name for her rare disease, it opened the door for thousands to receive support.

By Gina DeMillo Wagner

Many people living with rare disease describe life in terms of before and after. Before a diagnosis, they experience frustration, confusion, and exhaustion as they see various doctors and try to make sense of their symptoms. After a diagnosis, they may experience waves of relief mixed with a determination to find treatments—and often, grief about the impacts of the disease on their lives. No one understands how it feels to step across that invisible before-and-after line better than Julia Lefelar, Executive Director and Co-founder of The MOG Project.

“My disease started subtly, but with big impact,” Julia recalls. “I was brushed off for many years and told it was all in my head. I struggled even to get through the day. It was very traumatic.” It wasn’t until Julia experienced something measurable – blindness – that doctors took her seriously. “If someone had been an expert in this, they might have said ‘hey, maybe we should look at neurology’ but I didn’t have that, wasn’t afforded that. Blindness was what sent me right to a neuro-ophthalmologist, who eventually got me to a neuroimmunologist.”

This was in 2014, before most experts had even heard of Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD). “There was little information with questionable accuracy for patients, doctors or caregivers on the disease symptoms, diagnosis, prognosis, and treatment options,” Julia notes.

Once Julia had an official diagnosis, she immediately turned to helping others who may be living with MOGAD and experiencing the same hopelessness that she had felt.

Building a Community

A lot of rare organizations start with family members and other caring people. “When I started this journey, there was just nothing out there for me,” says Julia. “That was the motivation to get behind it.” Amy Ednie, Julia’s daughter Kristina, and another patient jumped in to help. Through their networks, they began to engage work colleagues, friends, family members, and other patients to get the organization off the ground. The MOG Project was born in late 2017 and officially became a recognized 501(c)3 non-profit organization in January of 2021.

Julia credits Amy for the early success of the organization. “Initially, we were just thinking of raising some funds, having a bake sales and car washes, and Amy said, oh no no no. think bigger! We have to make this a real organization.”

The project started out under the umbrella of Siegel Rare Neuroimmune Association (SRNA) and then established as a separate organization as awareness for MOGAD grew. Today, The MOG Project has approximately 6,000 registered patients worldwide and is continuing to grow and raise awareness among patients, doctors, and researchers.

Defining the Disease

One of the first priorities of The MOG Project was to establish MOGAD as a legitimate disease. “It felt like an emergency,” Julia recalls. People were dealing with debilitating symptoms without knowing why. “For the good of the patients, they needed answers, and they needed them quickly.”

“Getting a diagnosis is urgent, especially for people who wake up and are suddenly blind, which is what eventually happened to me,” Julia says. A quick response can help reverse the vision loss and prevent autoimmune encephalitis, which can be fatal. The goal is to get people out of the “MOG limbo,” that uncertain time where they have symptoms but no definitive answers.

MOGAD was originally thought to be a variant of Neuromyelitis Optica and its Spectrum Disorders (NMOSD). But experts realized there was a group of patients who also get unique autoimmune symptoms for which the MOG antibody is the cause. “Those presentations are very different and they need to have different resources,” Julia argues.

 That led to a new antibody test to identify MOGAD. “From there, we were able to put the focus on getting a new disease code.” The CDC uses something called the International Classification of Diseases (ICD) to name and describe different diseases. These codes validate the disease, which has implications for research, treatments, and health insurance coverages. In 2023, MOGAD was provided a code under the ICD-10. Soon, MOGAD will also be recognized by the World Health Organization too. “It makes it easier for patients to find experts, find potential treatments, and opens up new pathways to research.”

Finding Treatments

The current research on treatments is looking hopeful, Julia notes. There are clinical studies currently underway that are building off of previous research for other neurological and autoimmune disorders, such as Multiple Sclerosis and Neuromyelitis Optica.

As a result, more patients are making the transition from the frustrating “before” to the more hopeful “after” where they can find support, advocacy, and potential relief from MOGAD attacks.

Resources for Patients, Caregivers & Medical Professionals:

• MOGAD Facts & Information, including MOGAD and ADEM Disease information, understanding the diagnostic criteria, and more: https://mogproject.org/resources/fact-and-information-sheets/

• MOGmentum Disease Information, a 4-part learning series in graphic format for quick and easy understanding of the disease and its management: https://mogproject.org/resources/mogmentum/

• Rocket Surveys, which aim at collecting data on patient experience and providing that to researchers: https://mogproject.org/rocket-surveys/

• Our Blind Resources page provides helpful resources to allow caregivers of those who are newly blind to connect to invaluable services for regaining independence: https://mogproject.org/resources/for-the-blind/

• Clinical trials for MOGAD: https://mogproject.org/clinical-trials/