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.
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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…
Biting into a raw lemon is always a shocking experience no matter how many times you’ve done it. The smell of a lemon may be fresh and inviting, but the taste? Not so much. Yet when you take a sip of fresh lemonade on a hot day, it’s pleasant and…
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…
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…
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…
Advocacy is the action of advocating, pleading for, or supporting a cause or proposal. I’m a firm believer that we’ve all been an advocate or benefited from advocacy at least once in our lives. Personally, I’ve been able to experience the blessing of both having an advocate and working to…
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…
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