The Making of MOGAD Awareness Month and the Creation of “The Flock”

Kristina and Julia Lefelar, the daughter and mother team who began MOG Project for those in the MOGAD community.

Julia Lefelar was diagnosed with MOG (Myelin Oligodendrocyte Glycoprotein) Antibody Disease, also known as MOGAD in 2017, and is the executive director of MOG Project.

As the days get longer and sunshine comes to the Northeastern United States, so do the ruby-throated hummingbirds. Their size is small, but they have amazing strength, resilience, courage and tenacity. They are the international sign of hope. Not much different than the MOGAD Community who together decided to choose this tiny bird as their spirit animal and mascot in early 2018. The MOG Project keeps this notion alive as it represents this growing community of tenacious hummingbird warriors.

The idea of The MOG Project was born in 2017 when Julia Lefelar 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.

Members of The MOG Project advocacy group for the MOGAD community.

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!

Since then, The MOG Project has grown into the preeminent organization for MOGAD globally. It provides a place where patients, caregivers and medical professionals can get the most up-to-date educational information and connect to others in the MOGAD Community. Through fundraising, The MOG Project has been able to advance research through expert collaboration with renown experts, provide patient perspectives to research through patient surveys, make aware and garner participation in clinical studies as well as provide research grants through the Research for Rare program.

Also, the MOGAD Community now has many vetted resources available, social media presence on all major platforms for news and events, as well as a support network through the various MOGAD community connections offered. The support network includes a variety of support groups for the MOGAD Community as well as several private Facebook support groups such as MOG Antibody / Anti MOG Support and Info, Adults with MOG Antibody Disease (MOGAD) Zoom Support Group, and Support for Parents and Caregivers of Kids with MOGAD.

The MOG Project has also put its focus on policy as it put in the proposals to the CDC and WHO to make changes to their disease hierarchy in ICD-10 and ICD-11 to recognize MOGAD as a distinct disease with the backing of many clinicians and researchers worldwide. In 2024, the CDC officially accepted this proposal and a new disease code was assigned to MOGAD.

As a patient-led network, The MOG Project has bridged the gap between patients and their caregivers, the clinicians and researchers who treat and study MOGAD, and companies who develop treatments for the disease. By creating this “flock”, we have facilitated a network where learning about the disease is a two-way street. Patients not only are able to learn about their disease and get the best treatment for their rare disease, but researchers, clinicians and pharma companies learn from patient experience so that they can be as effective as possible. The “Flock” works for all and together they are strong. We will continue to fly together, as long as it takes.