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The MOG Initiative

The Neuroimmunology Clinic and Research Laboratory
Massachusetts General Hospital

Dr. Michael Levy
Dr, Michael Levy

Dr. Levy and the staff at The Neuroimmunology Clinic and Research Laboratory are pleased to share their research plans to help understand, diagnose, treat, and hopefully, one day, cure MOG Antibody Disease (MOGAD):

  • Creation of an online survey of MOG patients to determine efficacy of therapies

             In partnership with The MOG Project, they are reaching out to MOG patients in order to create a database of information that will help determine the best treatments for MOGAD.  They will publish the results of this survey to help patients and their physicians make informed decisions.  They may also use the information garnered to develop clinical trials in MOG antibody disease.

  • Mouse models to investigate tolerization

            They have been using mouse models to help develop therapies that will re-educate the immune system to stop attacking the myelin oligodendrocyte glycoprotein (MOG). 

            They are currently working with two companies to create pathways of potential tolerization in MOG mice with the goal to move these approaches to trials in humans.

  • Exploration of repurposing existing medications to stop MOG disease activity

            They are looking into the possibility that existing medications might be used to treat MOGAD.

In partnership with The MOG Project and researchers from the University of Missouri, they will take blood samples from patients and examine the levels of natural oxysterols (cholesterol compounds). The goal is to understand the role of cholesterol products in MOG antibody disease and to find new ways to stop MOG disease activity.

  • Upcoming clinical trials for MOGAD patients.

Dr, Levy recenly announced the FIRST EVER Clinical Trial for MOG-AD as shown in the video below.  Two more are expected in the coming months. When these trials launch, they will reach out to you, the patient community, to determine if you want to participate in a trial.

Let's hear the latest from Dr. Levy about what's happening at the MOG Initiative

Play Video

For more videos for The MOG Initiative, please visit our YouTube Channel for The MOG Initiative here.

As they pursue these avenues of research, your help is needed to make it happen

Here are some ways to participate:

Executive Director
Executive Board Member

Julia Lefelar

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 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.

Executive Board Member

Amy Ednie

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’. 

Director of MOG-AD Resources and Advocacy
Executive Board Member

Peter Fontanez

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. 

Director of Pediatric Research Advocacy
Executive Board Member

Jen Gould

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.

Director of Blind Resources
Executive Board Member

Andrea Mitchell

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.

Digital Marketing & Media Consultant
Advisory Board Member

Kristina Lefelar

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.

Chief Media Officer
Advisory Board Member

Jim Broutman

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. 

Director of Adult Research Advocacy
Advisory Board Member

Chuck Bies

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.

Social Media & Community Outreach Specialist
Advisory Board Member

Diana Lash

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.