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I have a theory: I’m convinced you can scream (almost) anything at a baseball game. The more obscure the cheer, the greater it is. “You call that peanut butter?!” “Turn ’em upside down!” “Let’s go, captain! Take ’em out to sea!” (This one is way more fun when said in…

March 25 was a day I won’t soon forget. My 13-year-old daughter, Bella, and I jetted off to Boston to attend The Sumaira Foundation’s 5th Annual NMO Awareness Gala at the Mandarin Oriental Hotel the following day. The trip took a few years of planning and preparation, including surviving…

When I walk through the doors of Satay Sate, a local Indonesian restaurant, the aromas that hit me instantly remind me of my childhood. I first ventured there after my dad died, and I was brought to tears at my first bite. It was like they had stolen Dad’s recipes.

The video series “Imagine My Life With NMO” has been launched by the Sumaira Foundation to help others in understanding what daily life can be like with neuromyelitis optica spectrum disorder (NMOSD). In the series, Sumaira Ahmed, the European foundation’s creator and a NMOSD patient, interviews other patients, their loved…

It didn’t start as a windy day. The sun beaming down on my face felt oh so good. Spending time on the water with my family was one of my favorite activities. At first, I thought Dad’s 28-foot boat purchase felt excessive, but when we piled our entire family onto…

People say that dogs are man’s best friend. In our family, Roxy, our 3-year-old Australian ridgeback rescue, is my 13-year-old daughter Bella’s best friend. Bella has always loved animals, which thankfully runs in the family. When she was hospitalized in 2017 due to a major neuromyelitis optica attack, she…

“Can you walk down the hall for me, please?” My specialist, with a stern look on her face, waits patiently. “And back again toward me now.” It feels so ridiculous that, as a 40-year-old woman, I’m being asked to do this. I steady myself and walk down the hallway. I…

Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by signing up their patient communities and connecting with researchers. Eric Sid, MD, program officer for the Office of Rare Diseases Research (ORDR), said it is difficult to estimate how…

I never imagined that a nurse would slap me across my face, but it happened. The slap wasn’t hard — it was just enough to jolt me back to reality, and I was grateful the nurse had done it. About 10 years ago, I was waiting for my cesarean section…

A chronic illness diagnosis can be stressful, overwhelming, and scary, especially when the illness is rare and has no cure. When my daughter Bella was diagnosed with neuromyelitis optica (NMO) in 2017 at age 9, we were instructed by her doctors to spend one hour online learning everything we could…