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Chuck’s Story: Getting Ahead of MOG

Embracing his son on his left and his wife on his right, Chuck smiles brightly as the three of them pose vivaciously in warm hiking gear and day packs on a trail atop a cool and clouded rocky mountain landscape in China.

In late December of 2018 I temporarily lost sight in my right eye, lost color vision in my left eye, and had severe pain “behind” my eyes.  Thanks to my ophthalmologist who had heard of this of disease, I was quickly diagnosed with Optic Neuritis and put on a high dose of steroids.  My eyesight recovered within a few days after the steroid treatment.  I was hoping this was some kind of infection that would never happen again, but just 11 days later I was diagnosed with MOG and learned I could lose my vision permanently if I had another attack.

Unfortunately the timing was horrible because we had a month long trip to China planned the next week to visit our son who was living there.  So my doctor prescribed steroids to take with me in case of another attack, and on January 15, 2019 we boarded a flight to Shanghai.

My wife and I were so worried for the entire month, afraid of another attack happening and unable to get help.

We were lucky – nothing happened.  Afterwards we wondered: will we be able to travel like this any more?

Chuck is posed between his wife and son on a stone trail in front of a Chinese garden pond surrounding a beautiful rufescent-stained wood building that features traditional Chinese architecture.
Chuck, his wife, and his son are dressed in traditional Chinese royal gowns staged in a throne room displaying a bright gold backdrop artistically embossed with dragons. Chuck's wife is seated between them, wearing a crown and dressed in a bright red gown as they roleplay a royal empress and her two subjects.

When we returned from the trip I started on Azathioprine as a preventative medication. I’ve had no more attacks, and we’ve been able to travel with peace of mind.  I also got involved with Julie and The MOG Project to help others with MOG find the support resources they need, and to help accelerate research for better treatments and to ultimately find a cure!

With preventive care my wife and I have been able to enjoy lots of travel during our retirement, including visiting our son who’s living in China.

A portrait of Chuck laying against the reinforced glass of a sturdy observation dome with his wife and son gleefully positioning the camera to reveal the city far beneath them.

By Chuck Bies

Massachusetts General Hospital
Harvard University

Michael Levy, MD, PhD

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.