awareness

A lot of people know who I am. They know my name and recognize my face. They might describe me as “busy,” “organized,” or “the one who always has a plan.” I’ve built a life that, from the outside, looks full of work, family, friends, and commitments. For a long…

If I had a dollar for every time someone said, “I shouldn’t complain to you,” I could probably fund my own research grant. It usually happens right after someone shares something stressful, such as their work drama, tough dental work, or a recent bad infection, and then suddenly they remember…

In 2018, when Nell Choi was 9 years old, she began experiencing symptoms that led to hospitalization and a diagnosis of neuromyelitis optica spectrum disorder (NMOSD), type positive. A month later, when Nell came home, she was weak, in a wheelchair, and had lost 20 pounds. To…

March is NMOSD Awareness Month, and advocates around the world are working to educate others and raise the profile of neuromyelitis optica spectrum disorder (NMOSD), also known as neuromyelitis optica or, simply, NMO. A major international initiative this year is to name March 27 as World NMOSD Awareness Day.

Initiatives are underway worldwide to mark NMOSD Awareness Month, with the goal of boosting awareness of neuromyelitis optica spectrum disorder (NMOSD/NMO) and spotlight people who live with the rare neurological disease. March has been recognized as NMOSD Awareness Month since 2016 in the U.S. and elsewhere. Leading the charge…

March 1 kicks off NMOSD Awareness Month, which aims every year to shed light on the experiences of people living with neuromyelitis optica spectrum disorder (NMOSD). The Sumaira Foundation (TSF) has led the month-long advocacy initiative in the U.S. since 2016, promoting efforts to spread knowledge about the…

It had to be something special for me to break my silence on X (formerly known as Twitter). I had to share my support for actress Christina Applegate after she appeared at this year’s Emmy Awards in mid-January. Applegate has multiple sclerosis (MS), which has many similarities…

A 15th birthday is a special event for a teenager. Whether you have a big celebration with lots of friends and family, or a small gathering with loved ones and furry friends, having the opportunity to celebrate another trip around the sun is memorable and fun. In my Mexican culture,…

A few weeks ago, the EveryLife Foundation for Rare Diseases hosted its 12th annual Rare Disease Week on Capitol Hill. This year, 600 advocates, including me, gathered in Washington, D.C., to learn about public policy, share our stories with legislators, and advocate for our communities. I never dreamed…

We all want to belong, but having a rare disease can sometimes feel lonely. Thankfully, the neuromyelitis optica (NMO) community has come a long way since I was diagnosed over 13 years ago. I’ve come a long way, too. Acknowledging that March is NMO Awareness Month is a…