Neuromyelitis optica (NMO) isn’t all bad. Hear me out. Sure, the needles, pain, and endless worry about permanent paralysis and vision loss are no fun, but there’s a silver lining if you know where to find it. At the start of every year, I think about all of the people…
Guthy Jackson Charitable Foundation
After experiencing all of the challenges that came with my 13-year-old daughter Bella’s neuromyelitis optica (NMO) diagnosis and the rareness of the disease, I wanted to find a way to connect with other NMO patients and caregivers. Bella was so young that I felt I needed the connections to…
When we are diagnosed with neuromyelitis optica (NMO), it can feel like we’re being pushed into the deep end of the pool and left to sink or swim on our own. Navigating a whole new life with a rare disease can be confusing and overwhelming. Part of that feeling…
Years ago, I saw a film called “Lorenzo’s Oil,” which was based on actual events. A child, Lorenzo, got sick with a rare disease, and his health deteriorated quickly, but nobody could help him. His parents were determined to find a cure. I greatly admired their tenacity, and I’m…
The SPHERES registry, an observational study to better understand the underlying mechanisms and clinical course of neuromyelitis optica spectrum disorder (NMOSD), as well as effects of current treatments, has enrolled its first patient. SPHERES, which stands for Synergy of Prospective Health & Experimental Research for Emerging Solutions in NMOSD,…
CorEvitas and the Guthy-Jackson Charitable Foundation (GJCF) announced plans to launch a registry study for people with neuromyelitis optica spectrum disorder (NMOSD). Called SPHERES — which stands for Synergy of Prospective Health & Experimental Research for Emerging Solutions in NMOSD — the observational study is expected to…
Activities are underway this month to raise awareness about neuromyelitis optica spectrum disorder (NMOSD), a rare progressive autoimmune disorder that affects about 15,000 people in the U.S. Patients, caregivers, and advocates nationwide are flooding social media platforms, garnering state proclamations, participating in educational webinars, and holding fundraisers — all…
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