NMO Awareness Month

This March, people with neuromyelitis optica spectrum disorder (NMOSD) are celebrating NMO Awareness Month by sharing stories of how the progressive autoimmune disorder has not stopped them from living meaningful lives. The initiative calls attention to NMOSD, a condition that affects approximately 15,000 people in the U.S. and 10,000…

We cannot separate science from life. Trust me, I’ve tried. Like most young people, I once thought of myself as invincible. So I was absolutely stunned when I was diagnosed with neuromyelitis optica (NMO) at the age of 24. With the diagnosis, my world came crumbling down. Yet while…

Today begins NMOSD Awareness Month, and to say that I have been busy preparing is an understatement. During the past month, in a push to have NMOSD Awareness Month recognized in all 50 U.S. states, I have applied for proclamations in my home state of Colorado, as well as…

I have never met Sumaira Ahmed in person, but her energy and passion radiate through computer screens and phone calls. It’s what convinced many of us to follow her charge and become ambassadors for her nonprofit organization, The Sumaira Foundation for NMO, or TSF for short. As…

For the first 10 years after I was diagnosed with neuromyelitis optica (NMO), I chose to keep my condition private because I worried about how others might perceive me. But over the past two years of the pandemic, I’ve made the conscious decision to own my truth. I’ve been…

Feeling misunderstood is one of the biggest challenges I face with neuromyelitis optica (NMO). This week, we took our daughter sledding with a couple of friends. Sledding is a Canadian rite of passage, though I’ll admit it feels dangerous most of the time. Our brave 9-year-old, prepared with a helmet,…

The Sumaira Foundation (TSF) seeks to raise $250,000 for research into neuromyelitis optica spectrum disorder (NMOSD) and related disorders at its 5th NMO Awareness Gala, set for March 26. The Hollywood-themed event will be held at the Mandarin Oriental hotel in Boston. For ballroom entry, all attendees must…

During the six weeks that my daughter Bella, 13, was hospitalized at Children’s Hospital Colorado for a neuromyelitis optica (NMO) attack in 2017, my husband and I kept vigil at her bedside. Too worried to sleep, we prayed for a miracle every night. As soon as we received Bella’s…

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…

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…