advocacy

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.

Note: This column describes the author’s own experiences with Ultomiris (ravulizumab-cwvz). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. When Alexion Pharmaceuticals first approached me about being featured for Rare Disease Day on Feb. 28, I initially declined the offer.

No one dreams of becoming a patient, especially one who must constantly advocate for their own care. Yet countless people living with neuromyelitis optica spectrum disorder (NMOSD) face this reality every day. Today, we honor Human Rights Day, which commemorates the adoption of the Universal Declaration of…

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…

When I was growing up, I was the girl in class who frequently received teacher comments on my report card saying “talks too much in class.” While I agree that I probably should have paid more attention to the subject matter (especially math) instead of socializing with friends, it’s no…

2023 was an incredible year for my family and me, full of growth, learning opportunities, job promotions, travel, mostly good health, and advocacy. At the beginning of last year, I set a goal to use my voice and spent the year advocating for my 15-year-old daughter, Bella, and everyone…

Serving our community should matter to all individuals. I’ve always believed that if each person were to dedicate time to a charitable cause, our society could bring about profound change. Just imagine the kind of world we could create together. Even though I came of age in a household with…

The Sumaira Foundation (TSF), a global patient advocacy group focused on neuromyelitis optica spectrum disorder (NMOSD) and a related condition, has presented Tim Walbert, CEO and president of Horizon Therapeutics, its inaugural Global Rare Trailblazer Award. The award was announced in Boston at the foundation’s…

I never wanted to be a disability advocate. I don’t know anyone whose childhood dream involved advocacy of any sort, but something happens, or you witness an injustice you can’t turn away from, and a champion is born. I was born an advocate, except I didn’t know it until that…