About The MOG Project
Starting The MOG Project
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. 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.
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.
Meet The MOG Squad Members
After many years of occasional temporarily dimming vision and chronic fatigue, Julia had a series of acute attacks of optic neuritis in 2014 and was diagnosed with Neuromyelitis Optica Spectrum Disorder (NMOSD). However, once the MOG antibody blood test was perfected, she was diagnosed with MOG Antibody Disease (MOG-AD) in 2017. It was this long, emotionally painful journey through the unknown that inspired the start of The MOG Project. After looking for answers for so many years, Julia did not want anyone else to ever feel alone in the search for help. Julia has worked as a Software Engineer and Project Leader at the senior and principal levels for 35 years and currently works at the Johns Hopkins University Applied Physics Laboratory. She uses her skills in project management to help organize the team’s activities and realize their goal to provide the most up-to-date information possible to those in need. She co-leads the SRNA Metropolitan Washington DC Area Support Group and is a key driving force around the success of our projects.
Executive Board Member
Amy is a long-time advocate and volunteer for various non-profit and volunteer organizations. Her experience and passion to help this cause has been instrumental in the growth of this idea into a positive force and impact in the world of MOG-AD and rare disease. She has over 25 years of successful leadership and global experience in an operations, consulting, sales, and marketing capacity (Unisys, Oracle, Illumina). She has an earned reputation for defining goals and objectives and creating action plans to accomplish those goals. She keeps us honest with practical advice and coaching and isn’t afraid to tackle the unknown with her connections, research and hands on approach to ‘get it done’.
Digital Marketing & Media Specialist
Kristina is a graduate of Towson University, where she achieved Summa Cum Laude honors in Psychology and Communications. She was a member of Pi Kappa Delta Honors Society, National Speech & Debate Association and The National Society of Collegiate Scholars. She is instrumental in driving the digital marketing plan for The MOG Project as well as PR strategies to further our mission. She helped create and co-moderate our first podcast on MOG-AD and has written and consulted on many of our projects, including blog and newsletter articles, website development, and social media management. She recently completed a theatre & acting intensive at the American Academy of Dramatic Arts in New York City, and continues to be involved in the entertainment industry in her spare time.
Executive Board Member
Curator of MOG-AD Research &
Community Outreach Ambassador
Peter is a firefighter paramedic near Orlando, Florida. His daughter, Isabel, was diagnosed with ADEM in February of 2016 which sent her to the hospital PICU. After almost making a complete recovery, she had a relapse of Multiphasic Acute Disseminated Encephelomyelitis (ADEM) with Optic Neuritis (ON) causing her to be hospitalized again. After a 2nd relapse, she was diagnosed with MOG-AD. He and his wife Pamela, along with their son Israel, have banded together to help Isabel and others who suffer with MOG and ADEM learn more about these diseases and help to further push research efforts. Together, he and Pam are proud of their incredibly close family that supports each other and loves to spend time together.
Executive Board Member
Ambassador For advocacy in pediatric research
Jen joined The MOG Project in late 2018. Her daughter, Sophia, was diagnosed with MOG-AD in January 2018 after a bout of encephalitis, followed by optic neuritis. Jen’s area of focus is pediatric MOG and helping fellow parents navigate this condition to find their new normal. She lives in Raleigh, NC with her husband, Mark and their two children Sophia and Sebastian.
Ambassador For The Blind
Andrea has had a relapsing form of MOG-AD since 2011. Her passion is to educate, empower, promote advocacy and support others dealing with this rare condition. She enjoys helping those who are newly blind find resources for gaining their independence. She is a volunteer for the SRNA and conducts support group meetings in the San Francisco Bay Area of California. She is also a Hope Ambassador for The Sumaira Foundation for NMO. She is happily married to James Mitchell who is passionate about advocacy in the caregiver role. She has a guide dog named Newcastle, The MOG Project Mascot!
Social Media & Community Outreach
Diana lives in Nevada, near beautiful Lake Tahoe with her husband, Kenny and their 2 daughters, Kennedy and Kylee. At age 12, her youngest daughter, Kylee, was diagnosed with Optic Neuritis in April 2018 and later MOG-AD. Diana joined The MOG Project in early 2019. Her goal is to spread awareness and advocate for this rare disease through her work with The MOG Project social media outlets on Facebook and Instagram.
Chief Media Officer
Jim was a publicist in Los Angeles for 17 years. In 2016, at the peak of a second career, he was struck with Transverse Myelitis (TM) and, at the time, what doctors thought were two Multiple Sclerosis (MS) lesions (he now has six lesions). This episode affected his ability to walk, caused memory issues and other various side effects. Eventually, he recovered his ability to walk, but was left with memory issues and the other side effects. These remaining issues, especially those affecting memory, caused him to be permanently disabled and say goodbye to his career. A year later, he developed Optic Neuritis (ON) and was officially diagnosed with MS for which he started treatment. Three months later, his blood work was sent to the Mayo Clinic by his local neurologist and tested positive for MOG, which subsequently ruled out MS. He was able to get an appointment with Dr. Pittock, the head of neurology at Mayo, and now refers to him as “My God and Doctor” (in partnership with his local neurologist). Jim is more than happy to be a guinea pig for Dr. Pittock’s research. Today, he uses no preventive treatment and Jim’s titer level was and still is 1:1000. To support Dr. Pittock’s research to find a cure, Jim has set up his own foundation with Mayo, which can be found on their website.
Ambassador for Advocacy in Adult research
Chuck recently retired from a 35-year career in information technology management. Chuck joined The MOG Project in late 2019 after being diagnosed with MOG-AD in January 2019 which included a temporary loss of vision caused by Optic Neuritis. As an advocate for The MOG Project, Chuck is focusing on aiding doctors in their research efforts for improved treatment options and ultimately a cure. He lives in Minneapolis, MN with his wife Susan. He has two grown-up children, Brian and Katie.
Medical Advisory Board
Dr. Michael Levy,
Dr. Levy is an Associate Professor in Neurology who was recently recruited to lead the research unit in the new Division of Neuroimmunology at the Massachusetts General Hospital. His mission is to build a combined clinical and research neuroimmunology program to develop therapies for patients with autoimmune diseases of the central nervous system. Dr. Levy moved from Baltimore, MD, where was on the faculty at Johns Hopkins University since 2009 and Director of the Neuromyelitis Optica Clinic.
Clinically, Dr. Levy specializes in taking care of children and adults with rare neuroimmunological diseases including neuromyelitis optica, transverse myelitis, MOG antibody disease and acute disseminated encephalomyelitis. In addition to four monthly clinics, Dr. Levy is the principal investigator on several clinical studies and drug trials for these conditions.
In the laboratory, Dr. Levy’s research focuses on four main areas:
1. Development of animal models of neuromyelitis optica (NMO) with the goal of tolerization as a sustainable long term treatment: His team generated a mouse model of NMO based on pathogenic T cells reactive against the aquaporin-4 water channel. Now, they are using this mouse model to create a tolerization therapy to desensitize the immune response to aquaporin-4.
2. Genetic basis of transverse myelitis: His team discovered a genetic mutation in VPS37a found in a group of patients with a familial form of transverse myelitis (TM). To understand how this gene is involved in this immune process, they generated a mouse model with this mutation.
3. The immunopathogenesis of MOG antibody disease: This may depend on a subset of T cells called gamma/delta T cells. These specialize T cells react to MOG in mouse models and attack the central nervous system. In addition to understanding why and how these T cells are involved in MOG antibody disease, they are developing a treatment to target these cells.
4. Biomarker assays for other autoimmune diseases of the central nervous system: They are developing assays that detect autoreactive T cells in NMO and MOG antibody disease. In parallel, they are screening for novel antibodies to glial cells in related disorders such as encephalitis and optic neuritis.
Dr. Elias Sotirchos, MD
Dr. Sotirchos is an Assistant Professor of Neurology at Johns Hopkins University and Director of the Johns Hopkins Neuromyelitis Optica Center. He earned his medical degree from the National and Kapodistrian University of Athens and subsequently completed his Osler internship and neurology residency training at the Johns Hopkins Hospital, serving as chief resident in his final year. He then pursued advanced clinical and research training in neuroimmunology at Johns Hopkins as a National Multiple Sclerosis Society Sylvia Lawry Fellow.
Dr. Sotirchos specializes in the diagnosis, management and treatment of neuroimmunological conditions that involve the central nervous system, including MOG-IgG associated disease (MOGAD), neuromyelitis optica spectrum disorder (NMOSD), and multiple sclerosis (MS). His research involves the application of imaging techniques, including retinal optical coherence tomography (OCT) and brain magnetic resonance imaging (MRI), to study these conditions. His work especially focuses on visual pathway involvement in neuroimmunological conditions, and aims to characterize mechanisms of neurodegeneration and to identify novel biomarkers for predicting and monitoring the disease course and therapeutic response.
Dr. Lisa K. Ryan, PhD
Dr. Ryan is an immunologist and toxicologist who has led research on the effects of environment and nutrition on the innate immune system and its role in viral infections such as influenza and Herpes Simplex Virus. In addition to faculty positions at the U.S Environmental Protection Agency (U.S. EPA), Rutgers University Health Sciences Center and the University of Florida, she has served as a scientific policy advisor in the U.S. EPA’s Office of Research and Development Office of Science Policy.
She served on many grant review committees for the National Institutes of Health, the Department of Defense’s Congressionally Directed Medical Research Program, the UK’s Medical Research Council, the Italian Ministry of Health, and private foundations. Dr. Ryan did her immunology training at the University of Pittsburgh and at Harvard Medical School at Massachusetts General Hospital in Boston. She currently is the Inhalation Toxicology Manager in Global Safety Assurance for Reckitt Benckiser and has a Courtesy Assistant Professor position at the University of Florida College of Medicine.
MOG Squad Champions
Pamela, is a loving and caring homemaker and mother who home-schools their two children, Israel and Isabel, a MOG-AD patient. She loves helping others and is a dedicated advocate for our cause, working along with her husband Peter.
Lisa is a multi-published author, screenwriter, filmmaker, speaker, and writing educator, from Nebraska by way of Tehran. She spent over twenty years in the nursing profession, and over a decade as a retail manager. She was diagnosed with MOG disease after an episode of optic neuritis in 2013. Although MOG has forced her into disability, she still pursues artistic endeavors, writing, and being an extremely amateur aviation apprentice. Her 13 grandchildren are the light of her life.
Katie is currently pursuing her MBA at the University of Virginia's Darden School of Business, concentrating in marketing. Prior to Darden, Katie graduated from the University of Pennsylvania with a B.A. in English. She then worked in public relations in Washington, D.C., specializing in opinion media and public policy issues advocacy. In April 2019, she suffered from a severe MOG-AD attack, which left her paralyzed for several weeks. Fortunately, she is recovering. Katie hopes to use her marketing and PR expertise to spread awareness of this disease.