Disease Information
Providing the most current Information for those with MOG-AD and their caregivers
Providing the most current Information for those with MOG-AD and their caregivers
Dr. Levy is an Associate Professor in Neurology who was recently recruited to lead the new Neuroimmunology Division 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 one of 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.
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 live cell-based assay was available, 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 over 35 years. 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 Wings of Hope, MOG Sloggers Support Group and is a key driving force around the success of our projects.
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’.
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.
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.
Andrea Mitchell has had relapsing form of MOG-AD since October 2011. It took 2 years for her to find the right diagnosis and due to a lack of aggressive treatment, she lost the sight in both of her eyes. MOG-AD has also affected her hearing and bladder. She often suffers from daily pain all over her body and continually fights off fatigue. She has a very loving and supportive husband named James. They have a sweet Pekingese by the name of Bubba and a loving retired guide dog named Newcastle. They have a beautiful yellow lab named Indy and he is Andrea’s new guide dog since October 2021. 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. As an Executive Board Member for The MOG Project, she assists in providing educational materials, conducts support groups and connects with others through social media and email inquiries. Her husband James is passionate about advocacy in the caregiver role. They currently live in the San Francisco Bay Area located in northern California.
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. Kristina works as an Account Manager at a marketing agency, managing consumer brands’ affiliate marketing programs in various industries (Fashion, Home Decor, Technology, etc.) She currently consults on our digital marketing & PR efforts. She helped create and co-moderate our first podcast on MOG-AD and has supported many of our projects, including blog and newsletter articles, website development, and social media management. As an extracurricular passion of hers, she completed a theatre & acting intensive at the American Academy of Dramatic Arts in New York City, and enjoys being involved in the entertainment industry in her spare time.
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.
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.
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.
In November 2014, Jenny had her first episode of simultaneous Bilateral Optic Neuritis (BON) which left her blind and hospitalized with a ‘suspected autoimmune aetiology’ cause for her diagnosis from a clinically and radiologically isolated presentation. Jen vowed that if her vision returned, she would pursue her dream as a Primary school teacher in which it did. In August 2019, she suffered a further episode of (UON) and a relapsing MOGAD diagnosis was given to her in March, 2020 when both her CSF and serum returned positive for the MOG antibody and her relapses continued.
Jenny joined the team to use her expertise in Mathematics to collect, organize and analyze data, her creativity and research skills to collaborate on projects and expand our social media networks, and globally connect neurologists and researchers around the world. Jen is a Primary school teacher in Sydney, Australia who has been educating kids since 2018. She is a strong advocate for little children, particularly those who have underlying health conditions.
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.
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 Neuroimmunology Clinic and Research Laboratory 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!
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.
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. 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.
Her research focuses on utilizing Systems Biology approach (genomics, transcriptomics and proteomics) to identify targets for therapy in MS and NMO. Dr. Han is also an attending physician at the Neuroimmunology clinic and at the Stanford Hospital.
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.
She has published over 250 scientific studies, including key publications on MOG-AD phenotypes and biomarkers. She receives grant funding from the Department of Defense, NIH, National MS Society and the Guthy Jackson Charitable Foundation. She is the recipient of several awards including the Joseph Martin Award for Clinical Research in 2019 from the Scientific Advisory Council at Massachusetts General Hospital, and the 2018 Milestones Award from the National MS Society. In addition to her mentioned positions, she is also a Director of the Translational Neuroimmunology Research Center, The CLIMB Study, and Partners Multiple Sclerosis Center at Brigham and Women’s Hospital as well as a Co-Director for the Partners Multiple Sclerosis Center Fellowship Program.
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.
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.
Dr. Banwell also serves as the Chair of the International Pediatric Multiple Sclerosis Study Group, and as the Chair of the International Medical and Scientific Advisory Board of the Multiple Sclerosis International Federation. More recently, Dr. Banwell has been asked to serve as a Co-Lead of the MOG International Diagnostic Criteria Working Group, and is a member of the MOG International Consortium.
Dr. Banwell studied medicine at the University of Western Ontario, followed by residencies in pediatrics at the University of Western Ontario and Child Neurology at the University of Toronto. She then pursued a Neuromuscular Fellowship at the Mayo Clinic, Rochester, MN. Dr. Banwell rose to the rank of Full Professor at the University of Toronto prior to relocating to The Children’s Hospital of Philadelphia in 2012. Banwell remains as an Adjunct Senior Scientist in the Research Institute at The Hospital for Sick Children, Toronto Canada.
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).
Dr. Chen specializes in the diagnosis, management and treatment of optic neuritis. He works closely with Drs. Pittock and Flanagan, Neuroimmunologists at the Mayo Clinic, to better describe the clinical manifestations of MOGAD. He has expertise in optical coherence tomography and how it relates to optic neuritis, which will be pivotal in understanding this tool as a biomarker of MOGAD optic neuritis outcomes and disease progression. In conjunction with the Neuroimmunology Laboratory, he aims to identify other biomarkers of autoimmune vision loss.
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 disease (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.
He currently directs the Mayo Clinic Neuroimmunology Laboratory which tests
approximately 200,000 patients for comprehensive neural antibody profiles (CAP and New York
State certified) pertinent to inflammatory CNS disorders. As Director of the Center for MS and
Autoimmune Neurology at Mayo Clinic, he has assisted in building the largest biorepository of
blood and cerebrospinal fluid samples from MS and inflammatory CNS disorders in the world.
Our Laboratory also provides testing for biomarkers of type 1 diabetes allowing collection and storage of more than 1000 serum samples. His research has been supported by Mayo Clinic, NIH (R01) and the Guthy-Jackson Charitable Foundation. He has published more than 300 peer reviewed papers in the field of MS and Autoimmune Neurology. He recently co-edited the first
textbook of Autoimmune Neurology.
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.
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.
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.
Dr. Ryan received her Ph.D. from the University of Pittsburgh in immunotoxicology and inhalation toxicology and was a postdoctoral fellow in pulmonary immunology with Harvard Medical School at Massachusetts General Hospital in Boston. She also studied microbiology, receiving her M.S. in medical microbiology from West Virginia University and a B.S. in microbiology from Penn State University. She also has industry experience in risk assessment with inhaled and skin-applied consumer products, working as Associate Manager for Inhalation Toxicology and the Established Portfolio for Reckitt.
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.
Currently, he is a Professor in the Department of Oral Immunology and Infectious Diseases at the University of Louisville. His research focuses on innate immunity, and ways to enhance our own immunity to infectious diseases, as well as the development of novel antibiotics and antiviral agents.
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.
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.
In 2013, Dr. Ramanathan established and has since been lead investigator of the Australian and New Zealand MOG Study Group, which encompasses over 150 neurologists, immunologists, and ophthalmologists from over 45 centres in the Asia Pacific region. She works closely with Professor Dale and A/Professor Brilot, and leads the evaluation of a cohort of over 500 MOGAD pediatric and adult patients. She leads the Translational Neuroimmunology Group at the University of Sydney. Her clinical and fundamental science research program is focused on understanding disease pathogenesis and improving the diagnosis and treatment of autoimmune neurological disorders including MOGAD, neuromyelitis optica spectrum disorder, autoimmune encephalitis, autoimmune muscle disease, and inflammatory neuropathies.
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.
Fabienne is a member of the International Society of Neuroimmunology (ISNI) International Advisory board. She is the Secretary of the International Women in Multiple Sclerosis (iWiMS) network. She also is the President of Neuroimmunology Australia, was the Scientific Chair of the 14th International Congress of Neuroimmunology (ISNI) 2018, and is the co-convenor of the 3rd Asia-Pacific School of Neuroimmunology (APSNI) in 2021.
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.
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).
Dana is an accomplished marketer with over 20 years’ experience project managing teams for complex website builds, mobile apps and social media marketing. Dana was diagnosed with MOG-AD in 2020 following a 30-day fever of unknown origin. In search of information on the disease, treatments, and prognosis, she found The MOG Project and began communicating with the team, offering contributions for new projects in addition to supporting the MOG-AD social media community. In her spare time, Dana is launching an art party business and hopes to open an art studio teaching arts and crafts for all abilities. She also enjoys creating her own art, making jewelry, and is working on a novel.
Eileen Coyne is mother to three boys, the youngest of whom was diagnosed with MOG-AD in March 2020 at age 10. Desperate to learn more about this rare disease, Eileen came across The MOG Project online and found it to be a life-line at a difficult time. A director at a national public relations agency, Kimball Hughes Public Relations, Eileen recognized that winning the attention of the media would be key to spreading awareness about MOG-AD and the incredible work done by The MOG Project. She introduced The MOG Project to the executive team at her agency and quickly sprang to action assembling a team and crafting a detailed media plan with the goal of raising the profile of MOG-AD to educate patients, caregivers and the public at-large. Since then, that partnership has led to high-profile media placements, including a syndicated piece in The Washington Post, a segment on the local NBC television affiliate in Washington D.C., and segments on international podcasts that have helped The MOG Project gain new attention from leading doctors in the space, patients, and caregivers, as well as major pharmaceutical players, grant makers, donors, sponsors and more.
James McKinsey is a seasoned public relations manager with experience working with nonprofit organizations and prior volunteer experience with groups like the Boy Scouts of America and the Connecticut Humane Society. James was introduced to The MOG Project by his colleagues at Kimball Hughes Public Relations and has played a key role in building a strategy and implementing tactics to raise awareness of MOG-AD by sharing The MOG Project’s mission and story with US and international media. Recognizing the need to capture the media’s attention, James crafted a detailed media plan, drafted and developed press releases, conducted outreach with leading doctors in the MOG-AD space and worked tirelessly to build contacts with key media. Notably, James led Kimball Hughes Public Relation’s efforts to secure a medical mystery column featuring the MOG-AD journey of Julia Lefelar, The MOG Project’s Executive Director, with syndicated author Sandra Boodman in The Washington Post.
Chelsea is a Junior at WVU studying marketing, with a minor in communications and an emphasis in professional sales. She hopes to work in sales technology & software operations. She has worked many summers at The MOG project, helping at events, coordinating social media, and her latest project, that will help us gain better understanding on how we can serve the MOGAD community through surveys and marketing data analytics. Chelsea has been with us since 2019 and is still going strong!
Dr. Levy is an Associate Professor in Neurology who was recently recruited to lead the new Neuroimmunology Division 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 one of 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.