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 people who are making a difference as part of The MOG Project
MOG Squad Members
Medical Advisory Board
Executive Board
PresidentCo-Founder
Executive DirectorCo-Founder
Director of MOG-AD Resources and Advocacy
Director of Pediatric Research Advocacy
Director of Blind Resources
Advisory Board
Digital Marketing & Media Consultant
Chief Media Officer
Director of Adult Research Advocacy
Social Media & Community Outreach Specialist
Australian Ambassador & Medical Professional Outreach Specialist
Support Group Leaders
Lil' Hummingbird Nest Support Group Leaders
Brian and Dawn Groves
Dawn and Brian Groves are parents to three girls and live in Stafford, VA. Their middle daughter was diagnosed with MOG-AD at 7 years old in the Fall of 2020. Trying to rapidly find and absorb as much information as possible about their daughter’s disease, they came across SRNA and attended a support group. As helpful as the group was, they realized the need for a group to support the unique needs of parents and caregivers of pediatric MOG-AD patients. After getting connected with The MOG Project, they asked Julia if a support group could be started. Dawn & Brian are thankful for the platform provided by The MOG Project to come alongside other families working through similar diagnoses with their children.
Lifting the MOG Fog Support Group Leader
Rebecca (Becca) Salky
Rebecca (Becca) Salky has had MOG since she was 4 years old, although she didn’t get the official diagnosis until she was 22. She knows what it’s like to live in uncertainty and to feel very alone in navigating the world of MOG. As a result, she decided to host support groups for young adults, in an effort to form a community of those diagnosed with MOG—a place where people can learn about the disease, as well as its symptoms, side effects, and treatments.
She is a nurse by training, currently working as a Clinical Research Coordinator at the NMO Clinic and Research Lab at Massachusetts General Hospital. She focuses on helping to spread awareness and lead clinical trials to find better diagnostic tools and treatments for MOG. Members of the support group she has been hosting for the past year tell her it’s a very meaningful experience for them and she has loved building a strong community of young adults dealing with similar life challenges. She hopes that anyone suffering from MOG (or MOG-like symptoms) will join her group!
US Medical Advisory Board
Michael Levy, MD, PhD
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 he was on the faculty at Johns Hopkins University since 2009 and Director of the Neuromyelitis Optica Clinic.
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.
May Han, MD
Dr. Han is a board-certified neurologist and a clinician-scientist who specializes in multiple sclerosis and central nervous system demyelinating diseases. She was born and raised in Burma (Myanmar) and received her medical degree at the Institute of Medicine (1), Rangoon. She did her post-doctoral fellowship training in protein and membrane lipid biochemistry under the mentorship of Dr. John Glomset at the Howard Hughes Medical Institute (University of Washington, Seattle).
She completed Neurology residency at University of Washington-affiliated hospitals and a fellowship in Neuroimmunology (MS) at Stanford with Dr. Lawrence Steinman. She joined the Stanford Neurology department and MS Center in 2009.
Tanuja Chitnis, MD, FAAN
Dr. Chitnis is a Professor of Neurology at Harvard Medical School, Senior Neurologist at Brigham and Women's Hospital and Massachusetts General Hospital, and Senior Scientist within the Ann Romney Center for Neurologic Diseases at Brigham and Women's Hospital where she created the Translational Neuroimmunology Research Center focused on bringing bench discoveries to clinical trials for MOG-AD, multiple sclerosis and neuromyelitis optica spectrum disorders. She created and serves as the Director of the Partners Pediatric MS Center at the Massachusetts General Hospital for Children.
Lauren Tardo, MD
Dr. Tardo is an Instructor in the Neuroimmunology division of the Department of Neurology at UT Southwestern Medical Center. She completed medical school at the University of Mississippi School of Medicine and completed her adult neurology residency at UT Southwestern Medical Center. Dr. Tardo remained at UT Southwestern for a fellowship in Neuroimmunology and Multiple Sclerosis with Dr. Benjamin Greenberg. She was trained to diagnose and manage both adult and pediatric patients with anti-MOG antibody associated disease. She is actively engaged in translational research and clinical trials within the Neuroimmunology Section. Dr. Tardo is board certified in neurology by the American Board of Psychiatry and Neurology.
Brenda Banwell, MD, FRCPC, FAAN
Dr. Brenda Banwell is Professor of Pediatrics and Neurology, Perelman School of Medicine, University of Pennsylvania (PENN), and Chief of Child Neurology, Children’s Hospital of Philadelphia (CHOP). She also serves as the Co-Lead of the NeuroImmune Program, an innovative age-span program that focuses on multiple sclerosis, MOG-associated disorders and other acquired inflammatory neurological conditions in children and adults.
Dr. Banwell has over 300 scientific publications and has chaired over 50 international courses focused on pediatric demyelinating diseases. Dr. Banwell leads a multisite North American prospective study of clinical outcomes, genetics, immunology, and neuroimaging features of MS in children. She has published studies focused on the clinical characteristics of MOG related disease in children, and on the MRI features of this disease.
John Chen, MD, PhD
Dr. Chen is a Professor of Ophthalmology and Neurology at the Mayo Clinic in Rochester, Minnesota. He earned his medical and PhD degrees from the University of Virginia and subsequently completed his Ophthalmology residency and Neuro-Ophthalmology fellowship training at the University of Iowa where he was selected as a Heed fellow. He joined the faculty at the Mayo Clinic in 2014 where he works closely with the Neuroimmunology Department and has a special interest in optic neuritis, especially in the setting of MOG antibody-associated disease (MOGAD).
Sean Pittock, MD
Dr. Pittock is a Professor of Neurology, Director of the Neuroimmunology Laboratory and the Center for
MS and Autoimmune Neurology at the Mayo Clinic. His expertise is in the laboratory and clinic
based diagnosis and management of immune mediated neurological disorders. He is considered
a leader in the field of glial autoimmunity as it pertains to inflammatory CNS demyelinating
diseases including MS. He currently serves as the chair of the Autoimmune Neurology Section at
the American Academy Neurology. His research is translational, and is focused on
1) the
identification of novel biomarkers of autoimmune neurological diseases (antibodies to AQP4,
GFAP, MAP1B-IgG, Kelch11);
2) the clinical application of laboratory-based tests in diagnosis
and outcome prediction for patients with autoimmune and paraneoplastic neurological disorders;
3) optimizing the clinical management of autoimmune and paraneoplastic neurological
disorders.
Eoin P. Flanagan, M.B., B.Ch.
Dr. Flanagan is a Professor of Neurology and Consultant in the departments of Neurology and Laboratory Medicine and Pathology at the Mayo Clinic (Rochester, MN). He did medical school at University College Dublin in Ireland in 2005 and later pursued neurology residency and neuroimmunology fellowship at Mayo Clinic (Rochester, MN). He received a Master’s degree in clinical and translational science at Mayo Clinic and is principal investigator on an NIH RO1 grant studying the epidemiology, pathology, radiologic features and outcome of Myelin Oligodendrocyte Glycoprotein antibody associated disorder (MOGAD). His clinical expertise and research is focused on MOGAD, aquaporin-4 antibody positive neuromyelitis optica spectrum disorder (NMOSD) and transverse myelitis. He directs teaching courses at the American Academy of Neurology on autoimmune encephalitis and myelitis. He works in the Autoimmune and Multiple Sclerosis Neurology Clinics and the Neuroimmunology Laboratory at the Mayo Clinic. He also has an interest in paraneoplastic neurologic disorders, autoimmune encephalitis and the epidemiology of MOGAD, NMOSD and autoimmune encephalitis.
Jonathan Santoro, MD
Dr. Santoro serves as the Director of the Neuroimmunology and Demyelinating Disorders Program at Children’s Hospital Los Angeles and as an Assistant Professor of Neurology at the Keck School of Medicine at the University of Southern California. Dr. Santoro completed his undergraduate, masters, and medical degrees at Tulane University. He subsequently completed residencies in pediatrics and child neurology at Stanford University School of Medicine and obtained sub-specialty training in neuroimmunology and pediatric multiple sclerosis at the Massachusetts General Hospital and Boston Children’s Hospital. Dr. Santoro’s pediatric-specific program is one of the largest on the west coast and utilizes a multi-disciplinary team model that optimizes patient outcomes and improves access to sub-specialty care. Dr. Santoro leads multiple clinical research studies designed at identifying endocrine biomarkers of disease in neuroimmunologic conditions as well as evaluation of specific neurocognitive disease phenotypes. Dr. Santoro is a long-standing advocate for persons with disabilities and has lobbied locally in California and on Capitol Hill through the American Academy of Neurology and the American Medical Association.
Lisa K. Ryan, PhD
Dr. Ryan is Associate Professor of Oral Immunology and Infectious Diseases at the University of
Louisville School of Dentistry and holds a joint Courtesy Assistant Professor appointment at the
University of Florida College of Medicine. She 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, the University of Florida, and the University of Louisville, 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.
Gill Diamond, PhD
Dr. Gill Diamond received his B.A. in biochemistry from the University of Pennsylvania, and his Ph.D. in genetics from the Hebrew University of Jerusalem. He did his postdoctoral research in the Division of Human Genetics and Molecular Biology at the University of Pennsylvania in the Children’s Hospital of Philadelphia, where he helped pioneer the field of antimicrobial peptides. He was a faculty member at the University of Medicine and Dentistry of New Jersey (a part of Rutgers University) and at the University of Florida.
UK Medical Advisory Board
Jackie Palace, BM, FRCP, DM
Dr Jacqueline Palace is a consultant neurologist in Oxford and a Professor in the Nuffield Department of Clinical Neurosciences, Oxford University. She is involved in running a national service for neuromyelitis optica and a national service for congenital myasthenic syndromes (CMS) and a lead of the Oxford Multiple Sclerosis group. Her research interests covers MS, NMO, CMS and myasthenia gravis and includes clinical treatment trials, immunological studies, pathology, biomarkers, genetics and imaging studies. She was the clinical lead for the National MS Risk Sharing Scheme which assessed the long-term effectiveness for disease modifying agents in multiple sclerosis, is a board member for the European Charcot Foundation, on the steering committee for MAGNIMS and was the Oxford lead for the European Rare Network for Neuromuscular diseases until Brexit.
Australian Medical Advisory Board
Fabienne Brilot-Turville, PhD
A/Prof Fabienne Brilot obtained her PhD in Belgium and at the JD Gladstone Institutes, UCSF, USA. She then became postdoctoral fellow under the mentorship of Professor Christian Munz (University of Zurich, Switzerland) at the Browne Center for Immunology and Immune Diseases headed by late Professor Ralph Steinman (Nobel Prize for Medicine 2011) at the Rockefeller University, USA. She was recruited at the Children’s Hospital at Westmead in Sydney in 2007 where she started the Brain Autoimmunity Group.
Fabienne is Principal Research Fellow at the University of Sydney, and her research focuses on neuroimmunological brain disorders such as demyelinating disorders and movement and psychiatric disorders. Her group aims to discover biomarkers and explores the autoimmune response in patients to improve their diagnosis and treatment. Through with many collaborations with paediatric and adult neurologists, her team has contributed to the characterization of MOG antibodies and the diagnosis of MOGAD.
Sudarshini Ramanathan, MD, PhD
Dr Darshi Ramanathan is a neurologist and clinician-scientist, with subspecialty expertise in neuroimmunology. She completed her neurology specialisation (FRACP), and was awarded her PhD on the clinical and immunophenotypic characterisation of MOG antibody associated diseases (MOGAD) through the University of Sydney. She undertook a postdoctoral fellowship with the Oxford Autoimmune Neurology Group at the John Radcliffe Hospital and University of Oxford, where she developed expertise in B cell immunology and neuroscience. She has been awarded a number of prestigious fellowships including an NHMRC funded PhD, an NHMRC Neil Hamilton Fairley Early Career Fellowship, and most recently, an NHMRC Investigator Grant. Dr. Ramanathan is a staff specialist neurologist at Concord Hospital where she looks after patients with autoimmune neurological disorders.
Russell Dale, MD, PhD
Professor Russell Dale is a Professor of Paediatric Neurology at the Children's Hospital at Westmead and University of Sydney. His primary interests are in autoimmune neurology and the role of the immune system in neurodevelopmental and neuropsychiatric disorders. He is Head of School and Head of the Speciality of Child and Adolescent Health at the University, and clinical director of the Kids Neuroscience Centre, a research centre of 100 researchers. He has published 270 peer reviewed publications, cited 17,000 times on Google Scholar, H factor 67, and has published some important work on the clinical and radiological phenotyping and treatment of autoimmune and inflammatory neurological disorders. He works closely with Dr Darshi Ramanathan and A/Prof Fabienne Brilot on autoantibody neurology syndromes in Sydney, including MOGAD.
Italian Medical Advisory Board
Elia Sechi, MD
Dr. Sechi is a neurology consultant at the Department of Medical, Surgical and Experimental Sciences at the University of Sassari (Italy), where he completed medical school and neurology residency. He was Assistant Professor of Neurology at the Mayo Clinic in Rochester (MN, USA), where he undertook a 3-year post-doc Neuroimmunology Research Fellowship and received a Master's Degree in Clinical and Translational Sciences. His clinical and research interest is in immune-mediated disorders of the CNS, with specific focus on CNS demyelinating disorders, including MOG-IgG-associated disorders (MOGAD) and AQP4-IgG-positive neuromyelitis optica spectrum disorders (NMOSD). He is also interested in disorders of the spinal cord (myelopathies).
MOG Squad Champions
Pamela Fontanez
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 Kovanda
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.