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Danielle’s Clinical Trial experience: Above and beyond the Call Of Duty

Danielle Silverman smiling in front of the water with the cityscape in the background

I have always lived under the motto that adversity makes you stronger. While this was always a motivating mantra to myself through life’s struggles before I became sick, it has certainly stayed true throughout my post-MOG-AD diagnosis.

My story may sound somewhat familiar to those living with MOG.  In 2019, I was first admitted to the ER with vision loss and pain in my right eye. I was admitted to the hospital for a five day course of IV steroids and was subjected to numerous tests to see if I had multiple sclerosis (MS) or neuromyelitis optica spectrum disorder (NMOSD). 

It wasn't until I had a specialist blood test done through the Mayo Clinic that I found I had tested positive for MOG antibodies.

While it was a big relief to have found a diagnosis, I had reached another hurdle of trying to find a treatment for a disorder without an FDA-approved treatment. I had to be on some form of medication, as every time I went off of oral steroids I would relapse. Additionally, I was moving around a lot.

I was first diagnosed in New York, but had relocated to Oklahoma where there were few specialists and even my neurologist had little knowledge of MOG. I tried two courses of IVIg which did not work for me, and was eventually stuck with the hopeless thought that I might have to continue to take low dose steroids until something changed. Knowing that staying on steroids for so long could impact my health definitely placed a toll on my quality of life. Thankfully, when I moved to Chicago to start my PhD all of that changed.

I was scrolling through The MOG Project‘s social media pages when I saw a recorded presentation given by Dr. Levy at Mass General. At the end of his presentation he mentioned a new clinical trial for a new drug, rozanolixizumab. I was in Denmark at the time and I immediately emailed him asking for more information about the trial. After a short introduction and background of my medical history with MOG, he said that I would be a perfect candidate and that there was a trial site only a short flight away from my home in Chicago in Peoria, IL. It was only a couple of months later that I breezed through my screening and was able to start the trial.

I felt like I was not only able to contribute to research in ways that would help me find a more sustainable level of care, but also was able to help all the other patients with MOG who perhaps could not participate.

Danielle Silverman looking over the Grand Canyon with a hat on
Danielle Silverman with pink hair in front of a canal with colorful houses in the background - possibly Amsterdam

It has been a great experience so far with lots of support from my medical team along the way. While living with MOG-AD has been both scary and enlightening at times, it is clinical trials like these and the individuals who organize them which shows that the research is moving forward and we are ever closer to improving the quality of life of MOG patients around the globe.

By Danielle Silverman

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.